Posted: March 12th, 2023
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Health Communication
in the New Media
Landscape
Jerry C. Parker, PhD, received his training in the fi eld of psychology, earning a mas-
ter’s degree from Xavier University and a PhD from the University of Missouri. He
is currently associate dean for research and clinical professor of physical medicine
and rehabilitation, School of Medicine, at the University of Missouri. Dr. Parker is
also director of the Missouri Arthritis Rehabilitation Research and Training Center.
At the national level, Dr. Parker has served on the NIH National Advisory Board for
Arthritis and Musculoskeletal and Skin Diseases and was a member of the NIH Con-
sensus Panel on Traumatic Brain Injury. He also has served on national peer review
panels for the NIH, the National Institute for Disability and Rehabilitation Research,
and the Arthritis Foundation. Dr. Parker’s research has focused on clinical problems
and the translation of clinical research into improved health outcomes. This re-
search, which has been funded by the NIH, the National Institute on Disability and
Rehabilitation Research, and the Arthritis Foundation, has resulted in a series of ran-
domized clinical trials examining various self-management interventions for persons
with rheumatoid arthritis. As director of the Missouri Arthritis Rehabilitation Re-
search and Training Center, Dr. Parker has overseen a comprehensive research pro-
gram in the area of arthritis rehabilitation, which involves projects in aerobic fi tness,
online self-management programs, workplace adaptation, support systems for juve-
nile arthritis, musculoskeletal problems of seasonal and migrant farmworkers, and
strategies for use of the mass media for improving health communication. In 1990,
Dr. Parker received the Merit Award from the Arthritis Health Professions Associa-
tion in recognition of “outstanding clinical scholarship in rheumatology.”
Esther Thorson, PhD, is professor, associate dean of the School of Journalism, and
director of research for the Reynolds Journalism Institute at the University of Mis-
souri. Dr. Thorson has published more than 100 scholarly articles and books on
news effects, advertising, media economics, and health communication and has
edited six books. She has headed grant and research contracts totaling nearly $3
million. She is the only female fellow of the American Academy of Advertising. She
applies research, both hers and that of her colleagues, in newsrooms and advertising
agencies across the United States and abroad. She serves on eight journal editorial
boards. She has advised more than 35 doctoral dissertations, and her former stu-
dents hold prestigious professorships throughout the United States and Asia. She
is the recipient of the American Advertising Federation’s Distinguished Advertising
Education Award, the American Academy of Advertising Outstanding Contribution
to Research Award, a Missouri Alumni Association Faculty Award, and the Missouri
Curator’s Award for Scholarly Excellence. Dr. Thorson has two central management
goals: fi rst to integrate theory and practice in graduate journalism and persuasion
education, and second to bring scholarly research to bear on the news and advertis-
ing industries. Her research (with Professor Duffy) for the Newspaper Association
of America has been presented in national forums throughout the United States.
Health Communication
in the New Media
Landscape
JERRY C . PARKER, P H D
ESTHER THORSON, P H D
Edi tors
NEW YORK
Copyright © 2009 Springer Publishing Company, LLC
All rights reserved.
No part of this publication may be reproduced, stored in a retrieval system, or
transmitted in any form or by any means, electronic, mechanical, photocopying,
recording, or otherwise, without the prior permission of Springer Publishing
Company, LLC.
Springer Publishing Company, LLC
11 West 42nd Street
New York, NY 10036
www.springerpub.com
Acquisitions Editor: Jennifer Perillo
Production Editor: Julia Rosen
Project Manager: Julia Rosen
Cover design: Joanne E. Honigman
Composition: Apex Publishing, LLC
08 09 10 11 12/ 5 4 3 2 1
Library of Congress Cataloging-in-Publication Data
Health communication in the new media landscape / [edited by] Jerry Parker,
Esther Thorson.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-0-8261-0122-8 (alk. paper)
1. Communication in medicine. 2. Mass media in health education. I. Parker,
Jerry C. (Jerry Calvin), 1947– II. Thorson, Esther.
[DNLM: 1. Delivery of Health Care—trends. 2. Communication. 3. Consumer
Participation. 4. Medical Informatics—methods. W 84.1 H437413 2008]
R118.H434 2008
610—dc22 2008024572
Printed in the United States of America by Bang Printing.
The author and the publisher of this Work have made every effort to use sources
believed to be reliable to provide information that is accurate and compatible
with the standards generally accepted at the time of publication. The author
and publisher shall not be liable for any special, consequential, or exemplary
damages resulting, in whole or in part, from the readers’ use of, or reliance on, the
information contained in this book.
The publisher has no responsibility for the persistence or accuracy of URLs for
external or third-party Internet Web sites referred to in this publication and does
not guarantee that any content on such Web sites is, or will remain, accurate or
appropriate.
www.springerpub.com
This book is dedicated to my wife, Jane, and our sons, Aaron and Adam,
who are the inspiration for all I do.
—Jerry C. Parker
This book is dedicated to my daughter, Kylie, who is on the brink of
discovering just how special she is. And to Margaret Duffy, who never
fails to share a great idea and a laugh—or two.
—Esther Thorson
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vii
Contents
Contributors xiii
Foreword by Paul R. Gully, MB, ChB, FRCPC, FFPH, World Health
Organization xxvii
Preface xxxi
Acknowledgments xxxiii
PART I: HEALTH COMMUNICATION: CURRENT
STATUS AND TRENDS 1
1 The Challenge of Health Care and Disability 3
Jerry C. Parker, Rebecca L. Woelfel, Eric S. Hart, and Gordon Brown
Assessing the Health of Nations 5
Overview of Health Status in the United States 6
Overview of Worldwide Health Status 14
Meeting the Health Care Challenge 17
Opportunities in the New Media Landscape 18
2 Emerging Demographics and Health Care Trends 23
Mary E. Northridge, Rubiahna L. Vaughn, and Alwyn T. Cohall
Ecological Model of Social Determinants of Health 23
Emerging Demographics 29
Health Care Trends 32
Challenges and Opportunities 35
Call to Action 36
3 Communication Strategies for Reducing Racial and
Cultural Disparities 41
María E. Len-Ríos
Disparities and Inequities 42
Research on Health Communication and U.S.
Racial/Ethnic Groups 43
viii Contents
Mass Media Health Campaigns for U.S. Ethnic/Racial Groups 44
Mass Media Channels 47
The Future of Mass Media Campaigns 52
4 Health Communication: Trends and Future Directions 59
Mohan J. Dutta
Contexts of Health Communication 60
Areas of Health Communication 63
Key Trends in Health Care 73
Grand Challenges in Health Care Communication 80
5 Emerging Trends in the New Media Landscape 93
Margaret E. Duffy and Esther Thorson
The Health Communication Media Choice Model 95
What’s Happening in Today’s Media? 95
Health Communication Research in the New Media
Landscape 98
The Health Communication Media Choice Model 99
Implications for Health Communication 109
PART II: HEALTH COMMUNICATION IN
THE NEW MEDIA LANDSCAPE 117
6 Enhancing Consumer Involvement in Health Care 119
Bradford W. Hesse
The Day The World Changed 119
Purpose of the Chapter 121
Consumer Behavior in the New Media Environment 122
Human Factors 122
An Era of Unfettered Access to Information 123
The Activated Patient 126
Caveats and Research Opportunities 141
7 E-Health Self-Care Interventions for Persons With Chronic
Illnesses: Review and Future Directions 151
Robert L. Glueckauf and Mia Liza A. Lustria
Methodology 153
Results 153
Contents ix
Other Online Self-Help Programs for Various Chronic Diseases 165
Conceptual and Methodological Issues 170
Implications for Practice 173
8 Increasing Computer-Mediated Social Support 243
Kevin B. Wright
Sources of Social Support on the Internet 244
Social Support and Health Outcomes 246
Relational Concerns When People Seek/Provide Support 247
Research on Computer-Mediated Support Groups 248
Theoretical Approaches to the Study of
Computer-Mediated Support Groups/Communities 252
Ways to Increase Computer-Mediated Social Support 258
9 Engaging Consumers in Health Care Advocacy
Using the Internet 267
Janet M. Marchibroda
The Need for Health Care Advocacy 268
Consumer Use of the Internet to Support Health Care Needs 270
Traditional Approaches to Advocating for Policy 273
Health Care Advocacy 274
Increase in the Use of the Internet for Advocacy 275
Using the Internet for Health Care Advocacy 276
Summary and Areas for Further Research 279
10 Improving Physician–Patient Communication 283
Petya Eckler, Gregory M. Worsowicz, and Katherine Downey
Current State of Physician–Patient Communication 285
Recent Developments in Physician–Patient Communication 286
New Media and Physician–Patient Communication 288
Practical and Operational Challenges of New Media 295
Implications for the Future 297
11 Health Literacy in the Digital World 303
Christina Zarcadoolas and Andrew Pleasant
Defi ning Health Literacy 304
Mapping Our Way to the Next Disaster? GIS, Emergency
Preparedness, and Health Literacy 307
Case Study: Electronic Medical Records 313
Health Literacy Load Analysis 316
x Contents
PART III: FUTURE DIRECTIONS 323
12 Making the Grade: Identifi cation of Evidence-Based
Communication Messages 325
E. Sally Rogers and Marianne Farkas
The Knowledge Gap 326
Knowledge Translation 327
Need for Knowledge Translation and Evidence-Based Practices 329
Rating the Quality of Research 329
Initiatives to Rate and Synthesize Health Care Research 331
Knowledge Translation and the Disablity Right to Know
Clearinghouse 332
Beyond Research Quality 333
Promoting Knowledge Translation of Health and Mental Health
Information 335
13 New Strategies of Knowledge Translation: A Knowledge Value
Mapping Framework 341
Juan D. Rogers
Knowledge Translation and the Defi nition of
a Communication Agenda 342
Communities of Producer-Users in Need of Translation 348
Content and Value in Knowledge Flows 352
Knowledge Value Mapping: A Framework of Knowledge Translation
Strategy Design 359
Concluding Remarks: Do We Need a New Institutionalization
of the Health Care Professions? 365
14 International Innovations in Health Communication 373
Muhiuddin Haider, Scott C. Ratzan, and Wendy Meltzer
Lessons From Past Experiences 375
Emerging Technologies 380
Limitations of New Technology in the Developing World 388
15 Connecting Cognate Fields: Health Communication
and Biomedical Informatics 395
Brian K. Hensel, Suzanne A. Boren, and Glen T. Cameron
Biomedical Informatics 396
Health Communication 401
Overlapping Research Foci and Variables 404
Contents xi
16 New Media: A Third Force in Health Care 417
Kristofer J. Hagglund, Cheryl L. Shigaki, and Jordan G. McCall
Access to Health Care 419
Health Care Quality 424
Health Literacy 427
Aging of Americans and Digital and Electronic Media 429
The New Media as the Third Force in Health Care 432
17 Health Communication in the New Media Landscape:
A Summary 437
Esther Thorson and Margaret E. Duffy
Index 447
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xiii
Contributors
Suzanne A. Boren, PhD, MHA, is an assistant professor of consumer health
informatics in the Department of Health Management and Informatics
in the School of Medicine at the University of Missouri and a research
health scientist with the Health Services Research & Development
Program of the Harry S. Truman Memorial Veterans’ Hospital in
Columbia, Missouri. Her major research interest is the appropriate use
of information technology to facilitate evidence-based self-care behavior
change in chronic illness.
Gordon Brown, PhD, is professor in the Department of Health Management
and Informatics in the School of Medicine at the University of Missouri.
He teaches and carries out research in work design and organization
and process change in health organizations and systems. From 1997 to
2007, he was chairman of the Department of Health Management and
Informatics, which included on-campus and executive master’s programs
in health services management and health informatics, a nationally
recognized postdoctoral training program in medical informatics funded
by the National Library of Medicine, and a doctoral program in health
informatics. During this time, the department built a strong research
program in health outcomes and community-based health services.
Dr. Brown holds an MA and PhD in health administration from the
University of Iowa, and a BS in industrial administration from Iowa State
University. He is recognized internationally for his leadership in health
administration education and has served as chairman of the Accrediting
Commission on Education for Health Services Administration and
chairman of the Board of the Association of University Programs in
Health Administration. From 1999 to 2007, Dr. Brown served as a
senior fellow at the Center for Health Care Quality, a center for health
quality research at the University of Missouri. He served as a scientist
with the World Health Organization on the development of integrated
xiv Contributors
regional health systems and on the faculties at the University of Iowa,
Pennsylvania State University, and the Universidad del Valle in Cali,
Colombia, prior to coming to the University of Missouri. Dr. Brown has
conducted research and authored numerous articles and book chapters
in addition to consulting nationally and internationally in the areas of
managing information technology, quality improvement, organization
strategy, integrated health delivery systems, and health administration
education.
Glen T. Cameron, PhD, is the Maxine Wilson Gregory Chair in Journalism
Research and co-founder of the Health Communication Research
Center at the Missouri School of Journalism. The author of nearly
300 books, chapters, articles, and convention papers, he has received
numerous national awards for individual research projects as well as
the Baskett-Mosse and Pathfinder awards for his entire body of work.
Dr. Cameron has extensive experience and proficiency in survey research,
experimental design, content analysis, and qualitative techniques such as
focus groups and in-depth interviewing. At Missouri, Dr. Cameron has
contributed to over $20 million in external funding from sources such
as the NIH, the National Cancer Institute, the Missouri Foundation
for Health, the USDA, the CDC, the NIDRR, the U.S. Department of
Defense, and Monsanto.
Alwyn T. Cohall, MD, is an associate professor at Columbia University ’ s
Mailman School of Public Health and New York Presbyterian Hospital,
where he is the director of the Harlem Health Promotion. He is also the
director of Project STAY (Services to Assist Youth)—a clinical program
that provides comprehensive medical and psychosocial services to high-
risk and HIV-infected youths. Through the Morgan Stanley Children’s
Hospital of New York Presbyterian, he has developed a private practice
devoted to the health and wellness of adolescents and young adults.
Dr. Cohall has authored several scientific papers in peer-reviewed
journals, coauthored a reference book for adolescents and parents
on common teen health problems, and coedited a recent edition of
Adolescent Medicine: State of the Art Reviews on the use of technology
to enhance adolescent health promotion.
Katherine Downey, MD, joined the University of Missouri Department
of Physical Medicine and Rehabilitation in July 2007. She received her
medical degree from the University of Missouri–Kansas City in 2004 and
Contributors xv
in 2007 completed a residency in physical medicine and rehabilitation
at the University of Missouri, where she served as co-chief resident
from 2006 to 2007. Dr. Downey works with traumatic brain injury and
general rehabilitation inpatients at the Rusk Rehabilitation Center. She
has presented regionally and is currently a member of the American
Academy of Physical Medicine and Rehabilitation.
Margaret E. Duffy, PhD, is chair of strategic communication and a faculty
and associate professor at the Missouri School of Journalism. She is
also principal investigator for the Missouri Arthritis Rehabilitation
Research and Training Center. Dr. Duffy was associate professor at
Austin Peay State University in Clarksville, Tennessee, before joining
the Missouri School of Journalism faculty in August 2001. At Austin
Peay State University, Duffy taught graduate and undergraduate
courses in organizational communication, marketing communication,
consumer behavior, public relations, advertising, integrated marketing
communication, and media business management and was the creator
and director of the university’s Institute for Corporate Communication.
Her research focuses on how individuals choose media; with Esther
Thorson, she developed a model that helps health communicators,
media companies, and advertisers create products and services tailored
to customer needs and interests. She has presented her research to
academics, advertisers, and news groups in the United States, China,
Thailand, Germany, South Africa, Canada, and Italy. Professionally,
she was previously a marketing, advertising, and public relations
executive for GTE Corporation, now Verizon Corporation. In 1995,
Duffy earned her PhD in mass communication from the University
of Iowa.
Mohan J. Dutta, PhD, is associate professor of health communication,
public relations and mass media in the Department of Communication,
and affiliate faculty member of Asian Studies, the Center for Education
and Research in Information Assurance and Security, the Discovery
Learning Center, the Burton D. Morgan Center for Entrepreneurship,
and the Regenstreif Center for Healthcare Engineering at Purdue
University. Professor Dutta is the 2006 Lewis Donohew Outstanding
Scholar in Health Communication and has received multiple research
and teaching awards for his scholarly contributions. At Purdue University,
he is a service learning fellow and a fellow of the leadership academy.
He teaches and conducts research in the areas of health communication
xvi Contributors
theory, the culture-centered approach to health communication, health
care disparities, and health campaigns.
Petya Eckler, MA, is a doctoral student of Internet health communication
at the Missouri School of Journalism. Her research interests include health
communication, strategic communication, new media, and international
health communication. She has worked in the areas of tobacco control,
breast cancer, cancer, and arthritis. Prior to joining the doctoral program,
she had professional experience in both journalism and public relations.
She received a bachelor’s in journalism and political science from the
American University in Bulgaria and a master’s in journalism from the
University of Missouri.
Marianne Farkas, ScD, a research associate professor, is currently the
director of training, dissemination, and technical assistance at the
Center for Psychiatric Rehabilitation, Boston University. In this role
she is currently the co-principal investigator of the Rehabilitation
Research and Training Center on Recovery for People with Mental
Illnesses and the co-principal investigator of the Innovative Knowledge
Dissemination and Utilization for Disability and Professional
Organizations and Stakeholders, working on developing a process for
knowledge translation in the disability research field. For more than
25 years, Dr. Farkas has worked in various capacities in the field of
psychiatric rehabilitation and has been recognized for her contributions
to the field with various awards. Among her many roles, Farkas was
in charge of the World Health Organization Collaborating Center in
Psychiatric Rehabilitation, providing training, consultation, and research
expertise to the WHO network around the globe. She has served on a
committee for the WHO to develop methods of categorizing evidence-
based and promising practices in the context of international literature.
She has developed training, consultation, and organizational change
methodologies to support programs and systems in their efforts to adopt
psychiatric rehabilitation and recovery innovations. Dr. Farkas is the
current president of the National Association of Rehabilitation Research
and Training Centers and the vice president of the World Association of
Psychosocial Rehabilitation.
Robert L. Glueckauf, PhD, is professor in the Department of Medical
Humanities and Social Sciences at the Florida State University College
of Medicine. Before moving to Florida State University in August 2003,
Contributors xvii
he directed the Center for Research on Telehealth and Healthcare
Communications at the University of Florida. Dr. Glueckauf obtained
his MS and PhD in clinical psychology at Florida State University. He is
former president of the American Psychological Association’s Division of
Rehabilitation Psychology and served as associate editor of the division’s
journal, Rehabilitation Psychology. Dr. Glueckauf has authored over 80
empirical and theoretical articles, books, and chapters in the field of health
care and rehabilitation and has been the recipient of numerous federal
and state grants. His research and clinical interests lie in the development
and evaluation of telehealth delivery systems for underserved individuals
with chronic illnesses and their family caregivers, the measurement of
rehabilitation and health outcomes, and family systems interventions for
persons with severe disabilities.
Paul R. Gully, MB, ChB, FRCPC, FFPH, is senior adviser to the Assistant
Director of General Health Security and Environment at the World
Health Organization in Geneva, Switzerland. He has an interest in risk
communication and policy issues related to avian influenza and pandemic
preparedness and emerging diseases. Up to April 2006, he was deputy
chief public health officer for Canada responsible for infectious diseases
and emergency preparedness and has held various posts in Health
Canada since 1990. Prior to that he worked in public health at the local
and regional level in Canada, the United Kingdom, and Zambia. Dr.
Gully is a physician with specialty training in public health in the United
Kingdom and Canada and has held honorary and adjunct academic
positions in the United Kingdom and Canada.
Kristofer J. Hagglund, PhD, ABPP, is the associate dean of the School
of Health Professions at the University of Missouri. He co-directs the
Center for Health Policy, a non-partisan research and policy analysis
organization committed to improving health care. He also serves as
interim director of the master of public health program at the University
of Missouri–Columbia. Dr. Hagglund’s current projects include grants
from the Missouri Foundation for Health to increase health literacy
and reduce health care disparities, and the Health Care Foundation of
Greater Kansas City to expand health equity collaboration. His recent
articles explore the financing and delivering of personal assistant services.
In 2006, he coedited a book entitled Handbook of Applied Disability
and Rehabilitation Research. Dr. Hagglund obtained a BA in psychology
from Illinois State University and a PhD in clinical (medical) psychology
xviii Contributors
from the University of Alabama at Birmingham. He is a diplomate of the
American Board of Professional Psychology and a fellow of the American
Psychological Association. He was a 2000–2001 Robert Wood Johnson
Health Policy fellow in the office of Senator Tom Harkin (D-IA), where
he worked on legislation addressing patients’ rights, mental health parity,
rural health care, the health professions workforce, community health
centers, and the National Health Service Corps.
Muhiuddin Haider, PhD, is an associate professor of global health at the
School of Public Health at the University of Maryland. He also serves
as adjunct faculty at Johns Hopkins University’s School for Advanced
International Studies and as a visiting professor in health communication
at the James P. Grant School of Public Health at BRAC University in
Bangladesh. He has served as an associate professor in global health
and international affairs in the Department of Global Health at the
School of Public Health and Health Services and in the Elliott School of
International Affairs at George Washington University. He has worked
in Asia, the Middle East, sub-Saharan Africa, and Latin America to
strengthen the health systems of developing nations. Among his areas
of expertise are health communications, infrastructure development,
training, capacity building, and health care reform, with an emphasis on
reproductive health, family planning, AIDS prevention, maternal and
neonatal health, child survival, and water management.
Eric S. Hart, PsyD, is a clinical assistant professor in the Department
of Health Psychology in the University of Missouri School of Health
Professions. He received his BS in psychology from Illinois State
University, his MA in clinical psychology from Eastern Illinois University
and his MA in counseling psychology and his PsyD in clinical psychology
from the Adler School of Professional Psychology in Chicago, Illinois.
Brian K. Hensel, PhD, MSPH, is a National Library of Medicine
postdoctoral fellow in health informatics at the University of Missouri.
Dr. Hensel’s research interests include health communication via
informatics applications in supporting chronic disease management
and health behavior change, and in improving long-term care provision.
His doctoral training at the Missouri School of Journalism focused on
health communication. He achieved a master of science in public health,
with a focus in health administration, in 1987 also from the University
of Missouri. Prior to entering his doctoral program, Dr. Hensel was a
Contributors xix
health care administrator for 15 years, overseeing home health, hospice,
and long-term care services. He has served on the board of the Kansas
Hospice Association and as a preceptor for the Xavier University graduate
program in hospital and health administration. Dr. Hensel is a fellow of
the University of Missouri Interdisciplinary Center on Aging.
Bradford W. Hesse, PhD, is chief of the Health Communication and
Informatics Research Branch at the National Cancer Institute. Trained
as a psychologist, Dr. Hesse has spent most of his career working to
improve the ways in which mediated communication environments can
be utilized to support behaviors in positive ways. His work has taken him
into the areas of human-computer interaction, medical informatics, health
psychology, media psychology, interpersonal communication, health
communication, and artificial intelligence. Dr. Hesse currently serves
as program director for the Health Information National Trends Survey
(a biennial survey of adults’ use of health information technologies), the
Centers of Excellence in Cancer Communication Research, and he has
accumulated a rich portfolio of basic science communication projects
and grants. Dr. Hesse also serves in an advisory capacity for the National
Cancer Institute’s User-Centered Informatics Research Laboratory
and is a standing member of the American Psychological Association’s
Electronic Resources Advisory Committee.
María E. Len-Ríos, PhD, is an assistant professor of strategic communication
in the Missouri School of Journalism. Len-Ríos’s research focuses on health
communication and underserved audiences, public relations campaigns
and crisis communication, and how social groups are represented in the
mass media. Her work has been published in the Newspaper Research
Journal, Journalism & Mass Communication Quarterly, the Journal of
Promotion Management, Public Relations Review , and Public Relations
Quarterly.
Mia Liza A. Lustria, PhD, is assistant professor at the Florida State
University College of Information, where she teaches information
science, information architecture, and health informatics courses for
the undergraduate IT program. Dr. Lustria earned her BS and MS in
development communication from the University of the Philippines,
and her PhD in health communication at the University of Kentucky.
She has expertise in consumer health informatics, particularly
in designing, implementing, and evaluating interactive behavior
xx Contributors
change technology systems for health communication and education.
Dr. Lustria is currently the principal investigator on a project involving
the design and evaluation of an informatics system to support rural
health care providers’ capacities to provide timely referrals for breast
cancer screening and adjuvant therapies in rural Florida. This 3-year
study is funded through a $348,000 grant funded by the Department
of Health Bankhead Coley Cancer Research Program. In addition, Dr.
Lustria has expertise in diabetes and behavioral cancer control research,
online health information seeking, use of Web 2.0 technologies for health
communication, computer tailoring, and health literacy issues.
Janet M. Marchibroda, MBA, is the chief executive officer of the
Washington, DC.–based eHealth Initiative and its foundation, national
nonprofit organizations that aim to improve the quality, safety, and
efficiency of health care through information and information technology.
She previously served as the executive director of Connecting for
Health, a public-private sector initiative funded and led by the Markle
Foundation and supported by the Robert Wood Johnson Foundation.
She cofounded and served as chief operating officer of two health care
information organizations that focused on the provision of compliance
information to physicians to support patient safety and the provision of
electronic publishing services to the payer community to support member
information needs. She also served as the interim chief operating officer
for the National Coalition for Cancer Survivorship and as the chief
operating officer of the National Committee for Quality Assurance,
an organization devoted to evaluating and improving the quality of
health care for Americans. She holds an MBA with a concentration in
organizational development from George Washington University. In
2005, she was recognized as one of the top 25 women in health care by
Modern Healthcare and in 2006 received the Federal Computer Week
Top 100 Award.
Jordan G. McCall, BS, BA, is an MPH candidate at the University of
Missouri–Columbia and a graduate teaching assistant in the School of
Health Professions. As a graduate research assistant at the Center for
Health Policy at the University Missouri, his primary research interest is
health literacy among older adult populations.
Wendy Meltzer, MPH, is the managing editor of the Journal of Health
Communication: International Perspectives, a scholarly peer-reviewed
Contributors xxi
journal that presents the latest developments in the field of health
communication, including research in social marketing, communication
(from interpersonal to mass media), psychology, government, and health
education in the United States and the world. With a focus on promoting
the vital life of the individual as well as the good health of the world’s
communities, the journal presents research on progress in the areas of
technology and public health, ethics, politics/policy, and the application
of health communication principles. Ms. Meltzer has managed the
journal since 2001. Previously, Ms. Meltzer was an editor and writer for
several consumer-oriented health advocacy publications. Ms. Meltzer
holds an MPH from the George Washington University School of Public
Health and Health Services.
Mary E. Northridge, PhD, MPH, is currently professor of clinical
sociomedical sciences at the Mailman School of Public Health at
Columbia University. She is also editor-in-chief of the American Journal
of Public Health. She currently serves as a faculty member and thesis
advisor for the urban planning program at the Graduate School of
Architecture, Planning and Preservation, the evaluator of the ElderSmile
Program at the College of Dental Medicine, and a co-investigator at the
Harlem Family Asthma Center. She is involved in community-based
participatory research on environmental and social determinants of
health, scholarly and practical applications of joint urban planning and
public health frameworks, health initiatives designed to mitigate asthma
and its triggers, and advocacy and teaching concerning environmental
and social justice issues. She has cotaught an interdisciplinary course
now titled Interdisciplinary Planning for Health that stresses sustainable
community-level interventions. She earned a BA in chemistry at the
University of Virginia; an MPH in environmental health at Rutgers, the
State University of New Jersey/University of Medicine and Dentistry of
New Jersey; and a PhD in epidemiology at Columbia University.
Andrew Pleasant, PhD, is actively involved in health literacy research
and practice. He currently has projects ranging from topics such as
HIV/AIDS in Kenya to improving practice in clinical care settings in the
United States. He is a coauthor of one of the best-selling books on health
literacy, Advancing Health Literacy: A Framework for Understanding
and Action (2006), has authored numerous peer-reviewed journal articles,
and constantly gives keynote presentations, grand rounds, and training
seminars on health literacy in the United States and internationally.
xxii Contributors
He has designed, led, and participated in research projects in the United
States, Kenya, South Africa, Ghana, China, India, and Mexico.
Scott C. Ratzan, MD, MPA, is vice president of Global Health,
Government Affairs & Policy, at Johnson & Johnson, and editor-in-chief
of the Journal of Health Communication: International Perspectives. He
was the founder and director of the Emerson-Tufts Program in Health
Communication, a joint master’s degree program between Emerson
College and the Tufts University School of Medicine. He continues
to maintain faculty appointments at the Tufts University School of
Medicine and George Washington University Medical Center as well
as the Cambridge University–Judge Business School and the College of
Europe in Belgium. In addition, he was the senior technical adviser in the
Bureau of Global Health at the United States Agency for International
Development, where he developed the global health communication
strategy for U.S.-funded efforts in 65 countries. His publications include
The Mad Cow Crisis: Health and the Public Good (1998), “Attaining
Global Health: Challenges and Opportunities” (2002), and AIDS:
Effective Health Communication for the 90s (1993). He has appeared on
Good Morning America and Nightline and has published articles in the
New York Times, Wall Street Journal, and Financial Times. Dr. Ratzan
received his MD from the University of Southern California; his MPA
from the John F. Kennedy School of Government, Harvard University;
and his MA from Emerson College.
E. Sally Rogers, ScD, is director of research at the Center for Psychiatric
Rehabilitation at Boston University, where she has conducted mental
health and vocational research since 1981. She is also a research associate
professor for the university’s Sargent College of Health and Rehabilitation
Sciences, where she has taught master’s- and doctoral-level research
courses and seminars She currently serves as coprincipal investigator
of a Research and Training Center grant that allows her to carry out
research studies on the recovery of individuals with mental illness,
another grant to culturally adapt a measure on recovery for Spanish-
speaking mental health clients, and a postdoctoral fellowship award
from the National Institute on Disability and Rehabilitation Research.
She was the principal investigator of a multisite grant to study consumer-
operated services funded by the Center for Mental Health Services
of the Substance Abuse and Mental Health Services administration.
Dr. Rogers has written over 50 peer-reviewed papers on topics related to
Contributors xxiii
the vocational rehabilitation, assessment, and recovery of persons with
severe psychiatric disabilities and has developed instruments currently
used by research studies and service organizations. In 2007, she
received the Loeb Research Award from the International Association
of Psychosocial Rehabilitation Services. She is a licensed psychologist in
the state of Massachusetts.
Juan D. Rogers, PhD, is associate professor of public policy at the
School of Public Policy, Georgia Institute of Technology. He received
his PhD in science and technology studies from Virginia Polytechnic
Institute and State University, and an EE from the University of Buenos
Aires, Argentina. Dr. Rogers teaches science and technology policy,
information management and policy, knowledge management, logic of
policy inquiry, and bureaucracy and policy implementation. His current
research interests include modeling the research and development
process; assessment of research and development impacts, especially
in the formation of scientific and technical human capital, technology
transfer; and research and development policy and evaluation. He has
been principal investigator and coprincipal investigator in projects
funded by the U.S. Department of Energy and National Science
Foundation to develop methods of assessment of research and research
impacts, including the flow of knowledge across institutional and sector
boundaries. He has been a consultant on the evaluation of publicly
funded research and development for agencies in the United States and
South America.
Cheryl L. Shigaki, PhD, is an assistant professor in the Department of
Health Psychology at the University of Missouri. Dr. Shigaki has published
in the areas of rehabilitation, including brain injury; access to health care
among people with disabilities; and the role of psychologists in shaping
Medicaid health care policy. Other areas of interest include aging and
chronic illness, health literacy, and adjustment to chronic conditions and
disability following cancer. Dr. Shigaki currently provides psychological
services to the Geriatric Inpatient Team of the Rusk Rehabilitation Center.
Dr. Shigaki obtained her PhD in clinical psychology from the University
of Florida in Gainesville. She completed her predoctoral psychology
internship at the Internship Consortium at the University of Missouri–
Columbia, and a two-year NIH T-32 postdoctoral fellowship through
the Department of Health Psychology at the University of Missouri.
Dr. Shigaki currently serves as chair of the American Psychological
xxiv Contributors
Association Committee on Disability in Psychology and is a member of
the University of Missouri Committee for Persons with Disabilities and
the School of Health Professions Research Committee.
Rubiahna L. Vaughn, MPH, graduated from Columbia University’s
Mailman School of Public Health in 2008. She is currently a medical
student at the University of Washington in Seattle. She earned her
bachelor’s in human biology from Stanford University. She is a Henry
Luce scholar and a Jack Kent Cooke scholar.
Rebecca L. Woelfel, BJ, is senior information specialist for the Missouri
Arthritis Rehabilitation Research and Training Center in the Missouri
School of Journalism. The focus of her current work is a civic journalism
strategic communication campaign to improve U.S. media coverage
of rheumatic diseases. She also promotes an interactive Web site to
coordinate care for children with juvenile arthritis. Woelfel has produced
a streaming video series for public school educators and administrators
on pediatric rheumatic diseases. Woelfel holds a bachelor of journalism
from the Missouri School of Journalism.
Gregory M. Worsowicz, MD, MBA, received his medical degree from
the University of Florida School of Medicine in 1986 and completed a
residency in physical medicine and rehabilitation at Baylor College of
Medicine in Houston, Texas, in 1990. After his residency he practiced
in both academic and private practice settings. He was on the faculty of
the University of Medicine and Dentistry of New Jersey’s Department of
Physical Medicine and Rehabilitation, serving as the director of satellite
services until 2002, when he was named chairman of the Department
of Physical Medicine and Rehabilitation at the University of Missouri–
Columbia School of Medicine and medical director of the HealthSouth
Howard A. Rusk Rehabilitation Center. In addition, he is presently the
chair of University Physicians at the University of Missouri, which includes
400 practicing physicians. His clinical and research interests include the
cost-effective systems of care/program development, health care policy,
and geriatric rehabilitation. He currently is a coprincipal investigator
for the Missouri Arthritis Rehabilitation Research and Training Center,
which is federally funded by the National Institute on Disability and
Rehabilitation Research. He has presented regionally and nationally on
practice management and systems of post-acute care. He has served as a
member of the board of directors for both the Association of Academic
Contributors xxv
Physiatrists and American Congress of Rehabilitation Medicine and is
currently the chair of the American Academy of Physical Medicine and
Rehabilitation’s Health Policy and Legislative Committee.
Kevin B. Wright, PhD, is an associate professor in the Department of
Communication at the University of Oklahoma, where he earned his
PhD in 1999. He is the author of three books and over 30 journal articles
and book chapters. The bulk of his research examines the relationship
between the communication of social support and health outcomes in
computer-mediated support group contexts among individuals dealing
with health issues. His other research interests include communication
among individuals with cancer and their caregivers, hospice and palliative
care, provider–patient interaction, health promotion campaigns, aging
and health, and face-to-face support groups for people facing health
issues such as substance abuse, HIV, and eating disorders.
Christina Zarcadoolas, PhD, is associate clinical professor in the
Department of Community and Preventive Medicine at Mount Sinai
School of Medicine. She is a sociolinguist nationally known for her work
in health and environmental literacy. She works at the intersection of
linguistics and cultural studies, focusing on analyzing and closing the
gaps between expert knowledge and public understanding of health
and environmental issues. Prior to coming to the Mount Sinai School
of Medicine, she spent 15 years on the faculty of Brown University.
Dr. Zarcadoolas is the lead author of Advancing Health Literacy: A
Framework for Understanding and Action (2006), a critically acclaimed
textbook that presents a multidimensional model of health literacy that
includes the domains of fundamental literacy, science literacy, cultural
literacy, and civic literacy. The New England Journal of Medicine recently
called the book “required reading” for public health professionals.
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xxvii
Foreword
Advances in communication technology offer new and exciting oppor-
tunities to empower individuals and groups in relation to their health,
to significantly enhance the quality of practice of health care and public
health professionals, and to address inequities in people’s access to health
information and services. In order to ensure these results, however, the
use of these technologies must be managed and directed appropriately,
and technological tools must be made equitably available.
Communication is at the heart of health care and health promo-
tion. Given that most people are driven by the need to influence fac-
tors that affect their lives (see “Enhancing Consumer Involvement in
Health Care” by Hesse in this volume), it can be assumed that they
will, where possible, respond to improved access to health information
to make better-informed decisions. For their part, health professionals
understand that the information that an individual needs is not limited
to that provided in a clinic or hospital. More equal access to informa-
tion, advice, and support through electronic means can be the foun-
dation of partnerships that lead to higher-quality care and improved
public health.
Through enhanced availability of health information, rapid ad-
vances in digital technology should promote greater equity and increased
opportunities to make informed decisions. However, the products of
technology have to be available in a form that is appropriate to the needs
of those wanting to promote their own health or the health of others.
There must be coherence between these needs and the tools available.
For example, the Web will work for some, while e-mail, text messaging,
video clips, telephone calls, and even reminders sent by mail will work
for others. If the appropriate tools do not exist, they should be developed
in partnership with the health consumer. Empowerment means linking
the needs of people to the right tools and enabling participation in their
development. Not only is access to information required, but a level of
xxviii Foreword
“health literacy” is needed, and the means to acquire this is also not al-
ways equitable.
Health is also influenced by factors that cannot be easily changed by
personal decisions, and the means to take action to mitigate risk from
lack of clean water, sanitation, safe food, and a clean and secure environ-
ment vary widely across societies and the globe. However, even where
there is a lack of basic services, wireless technology may be used to notify
authorities of outbreaks of disease, which will enable more rapid con-
tainment and alert populations as to external threats. In addition, the
Internet has great utility in enabling access to information or technology,
for example through telemedicine, in situations where there is absence
of or limited access to professionals.
The Internet can also enable access to social networks for the pur-
pose of support or as an aid in health promotion. Personal contact with
peers, friends, family, and the health professions will remain important
but can be complemented by electronic ways of securing advice and
support. This can translate into availability of knowledge and access to
virtual communities, even where health care and public health services
are not optimal.
Along with these benefits, rapidly developing communications tech-
nology brings real challenges for both health professionals and the pub-
lic. The huge number of research findings published, disseminated, and
reported on daily have to be interpreted by one and understood appro-
priately by the other. The creation and widespread availability of new
knowledge is way ahead of the means to make use of that knowledge.
The science of informatics can assist in the presentation of information,
but translation of knowledge is necessary. There is now greater access
to health portals, reviews, and authoritative advice, and decision makers
at all levels of government will need assistance in translating this knowl-
edge to help them make the most appropriate policy decisions.
There are also other forces at play that can easily negate efforts to
improve health. We cannot ignore the negative influences of the new
media in promoting unhealthy foods and tobacco, for example. We can
look to the social sciences to assist us in understanding why such efforts
are effective and perhaps use the same methods for a positive effect on
health.
Given the high prevalence of chronic diseases in many populations,
small reductions can result in major advances in population heath status.
In addition, acceptance of public health strategies such as immuniza-
tion can prevent acute disease, which puts extra strain on overburdened
Foreword xxix
health systems. Communication of risk during acute events is a funda-
mental part of public health practice and enables individuals and deci-
sion makers to make appropriate decisions at times of crisis as well as
helping health or emergency response authorities to better manage
an event. Opportunities offered by the new media can be used as an
additional means to influence avoidable mortality and morbidity, which
should not be ignored.
This book is a glimpse into the world of the new media; the authors
present analyses of evidence of the utility of new opportunities in a wide
variety of health environments. The chapters predominately focus on
health issues in the United States, but evidence of the usefulness of new
media and the needs of individuals and communities can and should
be considered by those with an interest in health promotion, care, and
treatment around the globe. In this volume there are examples of how
advances in technology not only empower individuals in their interac-
tions with a health system but also enable health professionals to better
tailor their work and time for the benefit of patients and clients.
Computers, which dominate our lives, should augment, not replace,
human thought (see “Enhancing Consumer Involvement in Health
Care” by Hesse in this volume). Our goal should be to promote the equi-
table distribution of tools so that we use advancing technology—the new
media—to benefit health for all.
Paul R. Gully, MB, ChB, FRCPC, FFPH
Senior Adviser to Assistant Director-General
Health Security and Environment
World Health Organization
Geneva, Switzerland
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xxxi
Preface
In recent decades, the growth in medical knowledge has been dra-
matic. Over 10,000 randomized, clinical trials are conducted annually,
and the budget of the National Institutes of Health has grown to over
$30 billion. Innovative research in areas such as genomics, cell resto-
ration, diagnostic imaging, prosthetics, and rehabilitation all hold the
potential to greatly improve health and to reduce disability for millions
of people across the globe. Yet compelling evidence suggests that the
rapid scientific advances in the fields of health care and medicine are not
being effectively translated into improved health outcomes.
Unfortunately, these well-documented failures are occurring at a
time when health care demands are expanding. Citizens in both devel-
oped and developing countries are living longer, and the percentage
of the global population older than age 65 is rapidly increasing. As a
result, a higher percentage of the population is living with one or more
chronic diseases—many of which would be potentially preventable if
evidence-based public health information were effectively translated
into practice. Currently, the diffusion of information into the awareness
of the general public (including health care practitioners) is frequently
passive and even serendipitous. Health-related research is typically pre-
sented at professional conferences and published in scientific journals,
but only a fraction of this information finds its way into the mainstream,
public media on the basis of selected stories that journalists and editors
deem newsworthy. Equally problematic, the news reports on scientific
research are often exceedingly narrow and do not effectively place new
research findings into an appropriate scientific context. In short, news
reports to the public generally do not provide a framework for behavior
change or for immediate application; they also are often contradictory.
Furthermore, the uneven adoption of evidence-based, health-related
research across racial and socioeconomic groups contributes to dispari-
ties in health care outcomes.
xxxii Preface
Digital technologies appear to present tremendous opportunities
for the dissemination of health-related and rehabilitation information.
Indeed, the transformation of the spectrum of human communication
as a result of advances in electronic media capability is occurring in dra-
matic fashion. E-mail, digital commerce, online television, cell phones,
iPods, and the general integration of all traditional modes of mass com-
munication onto the Internet have resulted in fundamental changes
in how the citizens of the world approach their basic communication
needs; the rapid adoption of electronic communication is reflected by
instant messaging, blogging, photo sharing, social networking, and video
downloads, among other digital capabilities.
This dramatic change in human behavior which is occurring as a
result of the new media landscape also poses many challenges. Cer-
tainly, the new media landscape raises fundamental questions about how
people interact with communication systems. For example, what will be
the role and meaning of “news” in the new landscape? How will people’s
perceptions of what is important and what is valued be altered? How
will people learn about health-related issues and health care? How will
persons with chronic diseases learn about resources, support systems,
and rehabilitation? What will be the impact of the new media landscape
on health care providers and on health care policies? This text seeks to
summarize what is known about these compelling questions.
Jerry C. Parker, PhD
Esther Thorson, PhD
xxxiii
Acknowledgments
Without Becky Woelfel, this book would never have come into being.
Ms. Woelfel organized the conference that spawned the book. She
pulled together the book proposal and helped us find the delightful Jen-
nifer Perillo at Springer Publishing. Ms. Woelfel supported every author
through the process of submissions, edits, and reedits. She reminded us
of deadlines and never lost sight of the end goal. Every single detail was
on her radar, and her goal was always to “do it perfectly.” All this was ac-
complished with the warmest and most supportive attitude imaginable.
No one ever dreaded an e-mail from WoelfelB! We thank this solid-gold
individual from the bottom of our hearts. We also would like to express
our heartfelt appreciation for the contributions of Kimberli Holtmeyer,
Katrina Rowland, Deborah Taylor, and Erin Willis—all of whom played
key roles in the development of this project. In all respects, their insight-
ful, strategic, and well-coordinated support has been greatly appreci-
ated, and their kindness, good humor, and creativity have contributed
immeasurably to the pleasure of this work. In addition, the authors of
the individual chapters, in all respects, were exceptionally responsive
and dedicated to this project, and their scholarly efforts were central to
an edited work of this type. Lastly, the authors would like to acknowl-
edge that the seminal ideas for this book were spawned in a state-of-
the-science conference funded by the National Institute on Disability
and Rehabilitation Research (NIDRR) within the U.S. Department of
Education (#H133B031120). The purpose of the conference was to ex-
plore the role of health communication for improving health care and
rehabilitation services for persons with disability, and the support from
NIDRR was deeply appreciated.
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PART
I
Health Communication:
Current Status
and Trends
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3
1
With few exceptions, the delivery of health care and the reduction of
disability are challenges for all nations and cultures. In the developing
world, access to health care is often severely limited, and programs for
reducing disability are, likewise, often unavailable. Even in developed
nations, systems for delivering health care and reducing disability are
frequently fraught with problems, although the nature of the problems
and the strategies used to solve them vary widely.
Indeed, each nation or society defines “health care” in its own way
and develops its own diagnostic and treatment theories, practices, and
tools to provide services that may range from cures to rehabilitation
to stabilization to the provision of comfort and palliative care (Jonas,
Goldsteen, & Goldsteen, 2007). The sum of all programs and institu-
tions that promote the work of diagnosis and treatment in a given
society can be labeled the health care system for that society (Jonas
et al., 2007).
To understand the challenges of health care and disability, an appre-
ciation of the concept of health is necessary. According to the World
The Challenge of Health Care
and Disability
JERRY C . PARKER, REBECCA L . WOELFEL ,
ERIC S . HART, AND GORDON BROWN
Preparation of this chapter was partially supported by the National Institute on Disability and
Rehabilitation Research (NIDRR) within the U.S. Department of Education (#H133B031120).
The views expressed in this chapter do not necessarily represent the views of NIDRR and are the
sole responsibility of the authors.
4 Health Communication in the New Media Landscape
Health Organization (1946), “Health is a state of complete physical,
mental and social well-being and not merely the absence of disease or
infirmity.” Jonas and associates (2007) discuss a similar definition put
forth by the International Epidemiological Association that describes
health as “A state characterized by anatomical, physiological and psy-
chological integrity, ability to perform personally valued family, work,
and community roles; ability to deal with physical, biological, psycho-
logical and social stress; a feeling of well-being; and freedom from the
risk of disease and untimely death” (p. 3). These particular definitions of
health, and many others, are exceedingly broad. Health care systems are
rarely able to promote health and well-being in this idealized manner.
Any definition of health begets the question of what determines health.
Jonas and associates (2007) describe the key determinants of health as
genetic inheritance, physical environment, social environment, health
behavior, and adequacy of health care. A similar framework for the de-
terminants of health has been provided in Healthy People 2010, which
is a comprehensive plan for promoting healthy living and reducing
health disparities in the United States (U.S. Department of Health and
Human Services, 2000); a schematic diagram of the determinants of
health is shown in Figure 1.1. In the figure, the individual is depicted
in the center; the health of a given individual is shown to be di-
rectly influenced by biology (e.g., genetic inheritance, unique biological
functioning) and by personal behaviors that have relevance for health
(e.g., diet, physical activity, substance use, tobacco use, sexual behavior,
risk-taking behaviors). The diagram also conveys that an individual re-
sides within unique physical and social environments that can exert an
influence on health status. The physical environment may affect health
status in numerous ways (e.g., air quality, sanitation, health hazards/
violence, presence of toxins), whereas the social environment may in-
fluence health status through mechanisms such as the degree of social
support, the magnitude of interpersonal stress/conflict, and the level of
socioeconomic well-being.
Figure 1.1 also conveys that health status is determined by access to
appropriate health care (or lack thereof), including the availability of pri-
mary, secondary, and tertiary health care services. Similarly, the policies
and conventions within a given health care system can exert an influence
on the health status of an individual (e.g., magnitude of health care expen-
ditures, decisions regarding health care priorities). Although the Healthy
People 2010 model for the determinants of health was conceptualized
in the context of the U.S. health care system, the general framework
Chapter 1 The Challenge of Health Care and Disability 5
appears to have relevance for other nations, societies, and cultures.
This chapter will examine the challenge of health care and disability in
the United States and abroad from the standpoints of chronic disease,
access to care, quality of care, and macroeconomics and will introduce
the potential contributions of health communication technologies.
ASSESSING THE HEALTH OF NATIONS
A comparative analysis of the performance, outcomes, and quality of in-
ternational health care systems is exceedingly complex, and an in-depth
discussion of this literature is well beyond the scope of this chapter. Yet
assessments of the health of nations have been performed, and those
nations that spend the most on health care are not necessarily the same
ones that achieve the best outcomes for their citizens. For example,
Nolte and McKee (2008) conducted analyses that were based on the
construct of “amenable mortality,” which refers to deaths that occur as
a result of causes that would not be expected to result in death if timely
and effective health care were available.
Figure 1.1 Determinants of Health
6 Health Communication in the New Media Landscape
Specifically, Nolte and McKee (2008) compared the United States
to 14 European nations, Canada, Australia, New Zealand, and Japan
between 1997 and 1998 and again between 2002 and 2003, analyzing
trends in amenable mortality in persons under age 75. Between the two
assessments, there was an average decline of 16% in amenable mortality
across all nations. However, the United States was a statistical outlier
with a decline of only 4%; the data revealed that the United States did
not experience a decline in amenable mortality at the same pace as other
industrialized nations. Furthermore, the data suggested that the relative
failure of the United States to reduce amenable mortality was associ-
ated with a lack of progress in reducing deaths associated with ischemic
heart disease and other circulatory diseases, especially stroke. Nolte and
McKee observed that the lack of progress in reducing amenable mortal-
ity coincided with an increase in the uninsured population of the United
States. Although all nations face unique health care challenges, the United
States is an example of a health care system for which the magnitude of
the financial investment has not yielded the desired outcomes.
OVERVIEW OF HEALTH STATUS IN THE UNITED STATES
Burden of Chronic Diseases
One indisputable fact is that everyone will die of something—so why be
concerned about deaths from chronic disease? The reality is that, by def-
inition, deaths from chronic disease are not quick; these deaths are often
protracted, painful, and premature. Furthermore, deaths from chronic
disease typically take an enormous toll on the affected individuals, their
families, and the economic systems in which they live.
According to data from 2001, chronic disease claims the lives of
more than 1.7 million Americans each year (Centers for Disease Con-
trol and Prevention, 2004). Specifically, five chronic diseases account
for more than two-thirds of all deaths in the United States; these five
diseases are heart disease, cancers, stroke, chronic obstructive pulmo-
nary diseases, and diabetes. A survey by the Kaiser Family Foundation
in 2005 found that 44% of the U.S. population lives with a chronic health
condition such as heart disease, cancer, asthma, diabetes, or other handi-
caps/disabilities that affect daily functioning (Kaiser Family Foundation,
2005). Recent data from the Centers for Disease Control and Preven-
tion (2005a) indicated that more than 90 million persons in the United
Chapter 1 The Challenge of Health Care and Disability 7
States are living with a chronic health condition. As might be expected,
persons with chronic diseases encounter difficulty obtaining appropriate
health care due to the high costs associated with these conditions, and
they are more likely to report financial burdens as a result of overdue
medical bills (Kaiser Family Foundation, 2005).
Chronic diseases are the greatest contributors to mortality in the
United States. In 2004, cardiovascular diseases accounted for over
872,000 deaths in the United States, which represented 36% of all deaths
in the nation (U.S. Department of Health and Human Services &
National Institutes of Health, 2007). Cerebral vascular disease alone was
the third-leading cause of death in 2004 and accounted for approxi-
mately 150,000 lost lives (U.S. Department of Health and Human Ser-
vices & National Institutes of Health, 2007). In 2001, approximately
550,000 deaths in the United States (23% of all deaths) were due to can-
cer (Centers for Disease Control and Prevention, 2004); 30% of these
deaths could be attributed directly to smoking, and all smoking-related
deaths are potentially preventable (Centers for Disease Control and
Prevention, 2004). Approximately 18 million Americans have diabetes,
and roughly 5 million of these persons are not even aware that they have
the condition (Centers for Disease Control and Prevention, 2004). In
2001, diabetes was the sixth-leading cause of death in the United States
and accounted for approximately 71,000 lost lives; deaths from diabetes
may be underestimated because secondary complications are commonly
listed as the cause of death on death certificates.
Risk Factors for Chronic Disease
To a great extent, chronic diseases are a reflection of the behaviors that
Americans engage in (or do not engage in) as they go about their daily
lives. The behaviors that are the most damaging to the health of Ameri-
cans and that contribute the most to chronic diseases include tobacco
use, failure to engage in sufficient physical activity, and failure to adhere
to healthful dietary practices (Centers for Disease Control and Preven-
tion, 2004). Specifically, the tendency for Americans to be overweight
has emerged as a major public health issue; a survey conducted during
1976–1980 and followed up in 2002 found that the prevalence of obe-
sity in the United States had doubled (Centers for Disease Control and
Prevention, 2005b).
This trend toward obesity starts early in life. Ogden, Flegal, Carroll,
and Johnson (2002) found that 15% of 6- to 19-year-olds were overweight;
8 Health Communication in the New Media Landscape
10% of 2- to 5-year-olds were found to be already overweight. The
National Health Nutrition Examination Survey shows that the percent-
age of overweight children and adolescents tripled from 5% in 1980 to
15% in 1999–2000 (Ogden et al., 2002). These trends appear to be a
result of both unhealthy dietary habits and insufficient physical activ-
ity; 300,000 deaths per year in the United States are associated with
unhealthy eating habits and sedentary lifestyles. In 2002, over 75% of
U.S. adults reported not eating the recommended daily quantities of
fruits and vegetables (Centers for Disease Control and Prevention,
2004). Based on data from the 2006 National Health Interview Survey,
62% of adults reported not engaging in vigorous leisure-time physical
activity of 10 minutes or more per week, although 24% did report engag-
ing in such activity three or more times per week (Pleis & Lethbridge-
Cejku, 2007). Using body mass as the criteria, the survey categorized
35% of adults as overweight (but not obese) in 2006, and 26% as obese
(Pleis & Lethbridge-Cejku, 2007).
In the United States, approximately 45 million persons smoke to-
bacco products (Centers for Disease Control and Prevention, 2007). The
data also reveal that the rate of decline in smoking among young people
has largely stalled, and approximately 3,900 young people initiate smok-
ing activity each day in spite of the extensive evidence linking smok-
ing and adverse health consequences (Centers for Disease Control and
Prevention, 2005c). Accordingly, approximately 8.6 million Americans
suffer from the consequences of tobacco use, including heart disease,
emphysema, and other smoking-related conditions and approximately
440,000 Americans die each year as a result of diseases that are attribut-
able to smoking (Centers for Disease Control and Prevention, 2005c).
Nearly 10% of these smoking-related deaths are due to secondhand
smoke (Centers for Disease Control and Prevention, 2005c). An inverse
relationship exists between smoking and educational level; people with
less education are more likely to use tobacco products (Centers for Dis-
ease Control and Prevention, 2007).
Health Care Access
Access to health care is a major issue for many U.S. citizens under the
age of 65 and for those who are not eligible for public assistance. Spe-
cifically, in 2006, nearly 44 million people in the United States (14.8%)
were without health insurance (Cohen & Martinez, 2007), which severely
restricts their access to care in the context of rising health care costs. Not
Chapter 1 The Challenge of Health Care and Disability 9
surprisingly, persons who do not have health insurance are less likely to re-
ceive recommended health services; analyses of the 2002 Behavioral Risk
Factor Surveillance System revealed decreased use of cancer prevention
services, cardiovascular risk reduction services, and diabetic management
among persons without health insurance compared to those with health in-
surance (Ross, Bradley, & Busch, 2006). Even among persons with higher
incomes, lack of health insurance coverage was associated with decreased
use of preventive health care services (Ross et al., 2006).
Iglehart (2002) found that the relative contribution of employers to
health care is decreasing and that the contributions of workers are ris-
ing. Thus, out-of-pocket health care expenditures are creating a major
financial burden for many Americans.
Indeed, financial concerns are a major barrier to care for persons
with major health conditions. A Kaiser Family Foundation survey in 2005
found that 24% of persons with major health conditions, as opposed to
only 14% of healthy persons, reported that health care costs were their
biggest monthly expense after rent or mortgage. In addition, 29% of per-
sons with chronic health conditions, as opposed to only 16% of healthy
persons, reported having an overdue medical bill. Of those with chronic
health conditions, 28% reported not being able to afford health care,
even though 62% had some form of health insurance. The greatest cause
for concern was that 29% of those who could not afford medical care
reported skipping medical treatment, cutting pills, or not having a pre-
scription filled as a result of limited funds.
Even for persons who are fully employed, health care in the United
States is often not affordable. Specifically, high deductibles, gaps in cov-
erage, and an unfortunate pattern of claims denials can place the working
poor on the brink of financial disaster (Shipler, 2004). Access to health
care also is not equal for all segments of American society; race, culture,
and socioeconomic class play undeniable roles in numerous ways, includ-
ing the responsiveness of providers, the ability to communicate health
care needs, and the potential for mistrust on the part of underrepre-
sented minorities. These health care disparities have been well docu-
mented in the IOM report Unequal Treatment: Confronting Racial and
Ethnic Disparities in Health Care (Smedley, Stith, & Nelson, 2002).
Health Care Quality
According to the Institute of Medicine, health care quality is defined
as “the degree to which health services for individuals and populations
10 Health Communication in the New Media Landscape
increase the likelihood of desired health outcomes and are consistent
with current professional knowledge” (Institute of Medicine & Commit-
tee to Design a Strategy for Quality Review and Assurance in Medicare,
1990, p. 21). However, the assessment of health care quality represents a
major challenge that can be approached from the standpoints of popula-
tions, individual health outcomes, clinical effectiveness, and patient safety.
Strategies for improving health care quality often involve information
technology and the communication of critical information to providers
and/or consumers. For example, research in the area of clinical effec-
tiveness frequently results in the publication of evidence-based practice
guidelines, but such guidelines must be effectively communicated and
ultimately adopted by practitioners if improved outcomes are to accrue.
Similarly, there is a growing awareness that medical errors are a
major problem that compromises health care quality; the IOM report
To Err Is Human (Kohn, Corrigan, & Donaldson, 1999) estimated that
nearly 100,000 deaths occur annually in the United States as a result of
mistakes associated with health care services. Medication errors alone
have been estimated to account for over 7,000 deaths annually (Phillips,
Christenfeld, & Glynn, 1998). Surprisingly, in 1998, more people died as
a result of errors in the U.S. health care system than from motor vehicle
accidents (43,458), breast cancer (42,297), or AIDS (16,516) (Martin,
Smith, Mathews, & Ventura, 1999). The root causes of medical errors
vary, but one key component involves inadequate clinical information
systems that inhibit access to timely and complete patient information.
In fact, Woolf, Kuzel, Dovey, and Phillips (2004) examined a series
of anonymous medical error reports and found that 67% of the cases
were set into motion by errors in communication; they describe numer-
ous examples of miscommunication, including information breakdown
among colleagues and/or with patients, misinformation in the medical
record, mishandling of patient requests/messages, inaccessible medical
records, and inadequate reminder systems. Compelling evidence exists
that inadequate communication systems play a key role in many of the
errors of diagnosis and treatment that occur in health care settings.
Disability in America
The Americans with Disabilities Act defines an individual with a disability
as someone who has a physical or mental impairment that substantially lim-
its one or more major life activities, has a record of such an impairment, or
is regarded as having such an impairment. A sizable portion of U.S. citizens
Chapter 1 The Challenge of Health Care and Disability 11
are living with some form of disability that affects their daily functioning
and has the potential to alter their quality of life. The 2006 Disability Status
Report for the United States (Rehabilitation Research and Training Center
on Disability Demographics and Statistics, 2007) found that the prevalence
of disability for persons ages 21 to 64 years was nearly 13%. For persons
ages 65 to 74 years, the prevalence of disability was over 30%; for persons
over age 75, the prevalence of disability was nearly 53%.
Disability confers major disadvantages in areas related to income,
employment, and overall financial well-being. In 2006, the employment
rate for adults with disabilities between the ages of 21 and 64 years was
only 38%, which is far less than the national average. In 2006, the median
annual household income of working-age persons with disabilities in the
United States was $36,300, and the poverty rate was over 25% (Rehabili-
tation Research and Training Center on Disability Demographics and
Statistics, 2007). Not surprisingly, these types of socioeconomic disad-
vantages for persons with disabilities create secondary stressors in many
areas, including access to health care.
In fact, access to health care is a profound problem for persons with
disabilities. Shigaki, Hagglund, Clark, and Conforti (2002) found that
74% of persons with disabilities who reported needing health care ser-
vices encountered difficulty accessing at least one service; persons with
spinal cord injury reported the greatest difficulty accessing health care
services (87%), followed by persons with brain injury (79%) and persons
who had experienced stroke (65%). They reported that dental services
were the most difficult to access, but that problems also were encoun-
tered accessing personal care attendants, medical supplies, eyeglasses,
durable medical equipment, physical therapy, and specialty medical
care, among numerous others.
A common reason for failure to access health care was found to be
limitations in Medicaid coverage (Shigaki et al., 2002). Many persons with
a disability face employment challenges and transportation barriers and,
accordingly, have limited incomes. Gaps in Medicaid coverage and other
components of the U.S. health care “safety net” create profound problems
for many Americans who do not have health insurance or substantive finan-
cial resources, but this is particularly the case for persons with disabilities.
Health Care Expenditures
Recent data from the Center for Medicare and Medicaid Services
indicate that $1.9 trillion was spent on U.S. health care in 2004; this
12 Health Communication in the New Media Landscape
translates to $6,697 per person (U.S. Department of Health and Human
Services, Centers for Disease Control and Prevention, & National Cen-
ter for Health Statistics, 2006). Health care spending accounted for 16%
of the U.S. gross domestic product in 2004, which was greater than for
any other developed country participating in the data collection of the
Organization for Economic Cooperation and Development. Personal
health care expenditures, including spending for hospital care, physician
services, nursing home care, dental care, and other medical services,
accounted for 83% of the $1.9 trillion spent on health care in 2004.
The U.S. Department of Health and Human Services, the Centers
for Disease Control and Prevention, and the National Center for Health
Statistics (2006) have provided data on the sources of funding and the
categories of expenditures for health care in 2004. Thirty-six percent was
paid by private health insurance, 34% by the federal government, 11%
by state or local governments, 15% in out-of-pocket spending, and the
remainder from other private funds. With regard to categories of expen-
ditures, 37% was paid for hospital care, 26% for physician care, 12% for
prescription drugs, 7% for nursing home care, and 18% for other per-
sonal care, such as visits to nonphysician medical providers, and medical
supplies. Hospital care expenditures declined by 9% from 1980 to 2004
(due to efforts to reduce bed days of care), whereas prescription drug
expenditures doubled.
Reports from the Centers for Disease Control and Prevention (2005a)
have shown that escalating health care expenditures cannot effectively be
addressed without recognition of the costs associated with chronic diseases.
Recent estimates suggest that chronic diseases account for 75% of the total
amount spent on health care in the United States (Centers for Disease
Control and Prevention, 2005a). Regarding specific conditions, spending
is currently approaching $128 billion annually for the combined direct and
indirect costs associated with arthritis; the direct and indirect costs associ-
ated with smoking exceed $193 billion annually. In 2001, $300 billion was
spent on treatment for cardiovascular diseases, and approximately $132
billion was spent on diabetes (Centers for Disease Control and Preven-
tion, 2005a). Therefore, even small reductions in the prevalence of chronic
diseases could result in major savings within the U.S. economy.
Future Challenges
In 1900, life expectancy for Americans at birth was 47 years (Kotlikoff &
Burns, 2005); today, life expectancy at birth is approximately 76 years
Chapter 1 The Challenge of Health Care and Disability 13
and rising. As a result of factors such as better nutrition and advances in
health care, Americans are generally living much longer. Data from the
U.S. Department of Health and Human Services, the Centers for Dis-
ease Control and Prevention, and the National Center for Health Sta-
tistics (2006) indicate that men are now expected to live 3 years longer
than they did in 1990, and women are now expected to live 1 year longer
than they did in 1990. In addition, mortality rates for many conditions
are declining, so the population of persons age 65 and over in the United
States is expected to increase from 12% in 2000 to nearly 20% by 2030
(Centers for Disease Control and Prevention, 2003).
The dramatic increase in longevity, however, has been occurring at
the same time that birth rates in the United States have been declin-
ing (Kotlikoff & Burns, 2005). Taken together, these combined trends
are resulting in the “graying of America,” or the more rapid growth of
the percentage of persons over age 65 than the percentage of persons
in younger age groups (Kotlikoff & Burns, 2005). Consequently, in the
future, an increasingly smaller percentage of working-age U.S. adults
will be producing the revenue to fund the social programs that will sup-
port an increasingly larger percentage of older Americans.
These demographic trends are worthy of more than casual interest;
they have profound implications for the economic future of the United
States. In 2008, the oldest baby boomers will be eligible for retirement,
and Social Security benefits and Medicare claims will follow not far
behind. Indeed, the benefits associated with these federal programs have
been promised to future generations, even though they have not been
funded in a sustainable manner. Accordingly, the potential funding short-
fall for Social Security and Medicare programs is staggering. Currently,
the gross official federal debt for the United States is approximately $9
trillion (U.S. Government Accountability Office, 2007). However, the
gross official federal debt does not take into account the implicit debt
that is inherent in future Social Security and Medicare commitments.
The Social Security component of the U.S. implicit debt has been esti-
mated to be $22 trillion; the Medicare component has been estimated
to be an additional $50 trillion. These two underfunded programs alone
combine for a total implicit U.S. debt of approximately $72 trillion. It has
been estimated that to meet debt of this astounding magnitude, today’s
workers would have to contribute all their earnings to debt retirement
for a period of 10 years (Kotlikoff & Burns, 2005). Therefore, the mas-
sive debt obligations associated with Social Security and Medicare pose
a tremendous challenge to the sustainability of these programs (in their
14 Health Communication in the New Media Landscape
current form) and, indeed, to the economic future of the United States
as a whole.
OVERVIEW OF WORLDWIDE HEALTH STATUS
In a figurative sense, the world is becoming “flat” (Friedman, 2005).
Specifically, a confluence of forces are operating that, in profound ways,
are reducing communication and trade barriers between nations; these
forces include the migration toward capitalistic economies in previously
communist countries (e.g., the former Soviet Union and China), the
emergence of the Internet and related digital technologies, the develop-
ment of workflow software that facilitates remote participation in com-
mercial activities, and a growing international workforce that is willing to
work for relatively low wages (Friedman, 2005). Although possibly less
apparent, these trends toward globalization have important implications
for worldwide health care. Specifically, the disease profile of the world is
undergoing rapid change (World Health Organization, 2005). Although
infectious diseases have historically been the major public health con-
cern in developing nations, the total number of people dying of chronic
diseases is now twice as high as those dying of the combination of infec-
tious diseases, maternal/perinatal conditions, and nutritional deficien-
cies (World Health Organization, 2005). More specifically, the emerging
epidemics of heart disease, stroke, cancer, and other chronic diseases are
beginning to take a tremendous toll in terms of worldwide deaths and
disability (World Health Organization, 2005). Without a doubt, there
continues to be a tremendous need to address communicable diseases
such as HIV/AIDS. There also continues to be a major concern regard-
ing the potential for worldwide pandemics involving infectious condi-
tions such as avian flu. However, trends toward globalization, dietary
changes, and migration away from agrarian lifestyles are beginning to
introduce a new set of health-related challenges throughout the world.
The health-related impact of globalization is complex, but it involves
a dietary transition in low- and middle-income countries toward the con-
sumption of foods that are high in fats, salts, and sugar (World Health
Organization, 2005). On the demand side, rising incomes from increased
economic productivity have created the ability to purchase processed
foods and have reduced the time people have for food production and
preparation. On the supply side, a greater percentage of the worldwide
population is becoming reachable through marketing and promotional
Chapter 1 The Challenge of Health Care and Disability 15
campaigns that encourage consumption of unhealthy foods. Notably,
a significant portion of global marketing is now targeted at children
(World Health Organization, 2005), which has major implications for
the health of future generations. Already, body mass indicators and total
cholesterol levels are increasing as national incomes rise in developing
countries (World Health Organization, 2005), and approximately 50% of
the worldwide population now lives in urban environments, which tend
to promote a sedentary lifestyle (World Health Organization, 2005). In
addition, as is occurring in the United States, the global population is
aging, and the prevalence of persons age 65 and over is projected to reach
973 million worldwide by 2030 (Centers for Disease Control and Pre-
vention, 2003). These trends increase the probability of chronic disease
(World Health Organization, 2005). Other risk factors that are known
to contribute significantly to global chronic disease include tobacco use,
excessive alcohol consumption, and high blood pressure (World Health
Organization, 2005).
In spite of the “flattening” world, poverty continues to be a reality
for a large segment of the global population, and poverty itself is a risk
factor for chronic disease. Poverty occurs in all countries, even the most
affluent. Economic deprivation restricts people’s access to the essential
elements for a healthy life, such as affordable foods, nutrient-rich diets,
adequate housing, and access to health care. Poverty also is associated
with psychological stress, high-risk behaviors (e.g., tobacco use), and
generally unhealthy living conditions. In addition, concerns about physi-
cal safety in economically deprived environments often restrict physical
activity, and cardiovascular disease has been found to be more prevalent
in deprived communities than in affluent ones (Stronks, van de Mheen, &
Mackenbach, 1998; Sundquist, Malmstrom, & Johansson, 2004). In
poverty-stricken environments, the availability of preventive care, diag-
nostic services, clinical interventions, and transport to health facilities
and access to medications are typically limited (Goddard & Smith, 1998;
Lorant, Boland, Humblet, & Deliege, 2002). Persons who live under
conditions of economic deprivation also frequently face health care dis-
parities in comparison to persons with greater financial means. Specifi-
cally, persons with low incomes are often marginalized within health
care systems and do not receive optimally responsive health care ser-
vices (Goddard & Smith, 1998).
Once chronic disease develops, a downward spiral toward increas-
ing poverty often begins. Persons with chronic diseases are less able to
work and hence to generate incomes, so their living conditions tend to
16 Health Communication in the New Media Landscape
deteriorate even further. If a person who becomes ill happens to be the
income earner for a family, the living conditions and health status of
the entire family, including children and the elderly in multigenerational
households, may suffer.
In all nations, there are macroeconomic dimensions to chronic dis-
ease. These dimensions include the direct costs of providing health care
services, the indirect costs associated with lost productivity, and, in some
countries, the loss of national income associated with premature mortal-
ity (World Health Organization, 2005). Figure 1.2 shows the projected
annual reduction in GDP associated with deaths due to heart disease,
stroke, and diabetes in 2005 and as estimated for 2015; the Russian Fed-
eration is expected to face an annual reduction in GDP of more than 5%
by 2015. Accordingly, for most nations, strong economic incentives exist
to reduce chronic disease, and viable strategies are available to improve
health-related outcomes; these include laws/regulations (e.g., water
fluoridation), taxation to reduce unhealthy behaviors (e.g., cigarette
taxes), improvement of public infrastructure (e.g., walking and biking
paths), community-based advocacy (e.g., promotion of smoke-free envi-
ronments), and public education (e.g., programs to improve nutrition
and physical activity). In spite of isolated successes, the overall global
Figure 1.2 Projected Annual Reduction in GDP from Deaths Due to Heart Disease, Stroke,
and Diabetes as Proportion of GDP, 2005–2015.
Chapter 1 The Challenge of Health Care and Disability 17
response to chronic disease remains inadequate (Yach, Hawkes, Gould, &
Hofman 2004).
MEETING THE HEALTH CARE CHALLENGE
Patient-Centered Health Care
A 2020 vision for health care has been provided by Davis, Schoen, and
Schoenbaum (2000) and elaborated by Davis, Schoen, and Audet (2005).
Although the vision was conceptualized for U.S. health care, the princi-
ples appear to be relevant from a global perspective, even though inter-
mediate achievements likely would be needed in developing countries.
Davis, Schoen, Audet, and Schoenbaum describe a vision of affordable
health insurance, accessible health care, patient-centered care, informa-
tion-driven care, and integrated quality improvement systems. They also
envision care that is predicated on the latest scientific evidence and sup-
ported by robust clinical information systems.
Interestingly, many of these elements of a 2020 vision for health care
involve communication systems in one form or another. For example, as
described by Davis and associates (2005), patient-centered care involves
access to health services that are augmented by digitized communica-
tion allowing patients to select their own appointments, to receive timely
responses to e-mails, and to obtain electronic prescription refills, among
numerous other features. This vision involves active consumer engage-
ment in care, as reflected by well-developed information systems that
have the ability to transmit data on health care conditions/problems,
treatment options, and treatment plans. Information would be made
available to both providers and consumers in the form of reminders and
alerts for preventive care or whenever abnormal findings emerge. Con-
sumers would have access to their electronic medical records and be
able to receive information that could inform behavior change, patient
education, and counseling/guidance.
In addition, Davis et al. (2005) envision access to clinical information
systems that would support quality improvement through mechanisms
such as patient registries, monitors of adherence, and informed decision
making. The patient-centered vision involves effective communication
among health care providers and the efficient transfer of clinical infor-
mation across a virtual provider network; continuous feedback systems
would exist in the form of automated patient surveys to facilitate practice
18 Health Communication in the New Media Landscape
improvement. Lastly, Davis and associates envision publicly available
information databases that would help consumers select providers and/
or health care facilities on the basis of performance on definable stan-
dards of care.
Disruptive Innovations in Health Care
The gap between current health care systems and the idealized vision
of patient-centered care is profound. A realistic strategy for bridging
this tremendous gap is hard to conceptualize, but Christensen, Bohmer,
and Kenagy (2000) describe the possibility of “disruptive innovations” in
health care. The key principle is that simpler, less expensive alternatives
to costly, inefficient care are possible, but that fundamental disruptions
to existing systems and institutions will be required for the necessary
changes to occur. Christensen and associates note that prior to 1980,
persons with diabetes could only learn their glucose levels through inac-
curate urine tests or by visiting a clinic where a blood sample could be
drawn and laboratory-based measurements could occur. Today, persons
with diabetes are able to carry miniature blood glucose meters wher-
ever they go, which permits them to easily access information that allows
self-management of many aspects of a disease that previously required
intensive physician management. The advent of miniature blood glucose
monitors is an example of a disruptive innovation; endocrinologists ex-
perienced less demand for their services, clinic revenues for diabetes
care decreased, and the companies that made the large laboratory-based
equipment for blood glucose testing were forced to leave the market.
More specifically, a technologic innovation that permitted information to
be made directly available to people with diabetes at the point of decision
making resulted in notably improved (and less expensive) health care.
OPPORTUNITIES IN THE NEW MEDIA LANDSCAPE
In the new media landscape, developments in the fields of information
technology and communication systems may enable disruptive innovations
and creative solutions that can be brought to bear on many challenging
health care problems. The availability of information at the optimal time
and place may better inform lifestyle choices, promote preventive health
care, improve interdisciplinary coordination of care, and enable more
informed selections of health care providers and services. For example,
Chapter 1 The Challenge of Health Care and Disability 19
Woolf, Krist, Johnson, Wilson, Rothemich, Norman, and Devers (2006)
found that even a well-designed Web site can promote improvements in
stage of change and health behaviors over a short-term follow-up. Several
recent studies and editorials also have made a strong case that the basic
Google search engine itself will have a substantial impact on clinical deci-
sion making and consumer behavior over time (Giustini, 2005, 2006; Tang
& Ng, 2006). Through the use of advanced bioinformatics technology, the
practice of medicine in the future is expected to personalize health care
through access to an individual’s unique genetic profile (Giustini, 2007).
Until recently, physicians possessed specialized knowledge to which
patients had limited access, but now patients who are willing to invest
sufficient time and energy may come to know as much (or more) about a
condition than do their providers (Christensen, Anthony, & Roth, 2004).
Indeed, the following chapters in this volume explore the various ways
that information technology and health communication systems can be
used to address challenging health care problems. Although the gap
between health systems at the beginning of the 21st century and the
ideals of patient-centered care is enormous, there is reason to hope that
health communication opportunities in the new media landscape will
assist both developed and developing nations to move toward creative,
“disruptive” solutions and improved health status for their citizens.
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2
In this chapter, first an ecological model that traces how health commu-
nication tools at various levels (societal/macro, community/meso, and
interpersonal/micro) may affect individual and population health and well-
being is presented, with examples drawn from ongoing initiatives at the
Harlem Health Promotion Center, where the authors are based. Second,
the scholarly and scientific public health literature is reviewed in order to
explain both emerging demographics and health care trends that are
central to the development of health communication approaches and
methods in the new media landscape. Next, reflections on the current
challenges and possible new strategies for reaching diverse populations
with health and health care information are offered for consideration.
Finally, a call is issued for needed policy reforms that will abet efforts to
improve health and health care through diverse health communication
tools, including those envisioned by the other contributors to this volume.
ECOLOGICAL MODEL OF SOCIAL
DETERMINANTS OF HEALTH
Table 2.1 presents an ecological model of social determinants of health
that was adapted to include health communication tools at various levels
of influence.
Emerging Demographics
and Health Care Trends
MARY E . NORTHRIDGE, RUBIAHNA L . VAUGHN,
AND ALWYN T. COHALL
ECOLOGICAL MODEL OF SOCIAL DETERMINANTS OF HEALTH
FUNDAMENTAL FACTORS
(SOCIAL/MACRO LEVEL)
INTERMEDIATE FACTORS
(COMMUNITY/MESO LEVEL)
PROXIMATE FACTORS
(INTERPERSONAL/MICRO
LEVEL)
HEALTH AND WELL-BEING
(INDIVIDUAL AND POPULATION
LEVELS)
Health communication tools
Web sites
Music videos
■
■
Health communication tools
Billboards
Ads in subway sta-
tions and check cashing
establishments
■
■
Health communication tools
Culturally apt DVDs and pamphlets
Text messaging
■
■
Health communication tools
Maps of community health
indicators and health care
facilities
Electronic medical records
■
■
Natural environment
Topography
Climate
Water supply
Air quality
■
■
■
■
Built environment
Land use (industrial, resi-
dential; mixed use
or single use)
Transportation systems
Services (shopping, bank-
ing, health care facilities)
Public resources (parks,
museums, libraries)
Zoning regulations
Buildings (housing,
schools, workplaces)
■
■
■
■
■
■
Stressors/buffers
Environmental, neighbor hood,
workplace, and
housing conditions
Violent crime and safety
Police response
Financial insecurity
Environmental toxins (lead,
particulates)
Unfair treatment (stigma,
prejudice, discrimination)
■
■
■
■
■
■
Health outcomes
Mental health
Injury/violence
HIV/AIDS
Obesity/overweight
Cardiovascular diseases
Diabetes
Cancers
Infectious diseases
Sexually transmitted diseases
Respiratory health
All-cause mortality
■
■
■
■
■
■
■
■
■
■
■
Table 2.1
2
4
Macrosocial factors
Historical Conditions
Political orders
Economic orders
Legal codes
Human rights doctrines
Social and cultural
institutions
Ideologies (ageism,
sexism, racism, social
justice, democracy)
■
■
■
■
■
■
■
Social context
Cultural identity
Community investment
(economic development,
maintenance, police
services)
Policies (public, fi scal,
environmental, workplace)
Enforcement of ordinances
(public, environmental,
workplace)
Community capacity
Civic participation and
political infl uence
Quality of education
■
■
■
■
■
■
■
Health behaviors
Health screenings (HIV, cancer,
hypertension)
Physical activity
Dietary practices
Substance use (e.g., tobacco,
alcohol)
■
■
■
■
Well-Being
Hope/despair
Life satisfaction
Psychosocial distress
Happiness
Disability
Concealment of identity
Expectations of rejection
Body size and body image
■
■
■
■
■
■
■
■
Inequalities
Distribution of material
wealth
Distribution of employ-
ment opportunities
Distribution of educa-
tional opportunities
Distribution of political
infl uence
■
■
■
■
Social integration
Social participation and
integration
Shape of social networks
Available resources within
networks
Coping and social support
■
■
■
■
Adapted from “Sorting Out the Connections Between the Built Environment and Health: A Conceptual Framework for Navigating Pathways and
Planning Healthy Cities,” by M. E. Northridge, E. D. Sclar, & P. Biswas, 2003, Journal of Urban Health, 80, pp. 556–568. © Copyright 2003 by
Journal of Urban Health. Adapted with permission.
2
5
26 Health Communication in the New Media Landscape
Overview of Model
In its original form (see Northridge, Sclar, & Biswas, 2003), this ecologi-
cal model introduced a joint urban planning and public health frame-
work that is centrally concerned with the social, political, economic, and
historical processes that generate the urban built environment. Specifi-
cally, the natural environment, macrosocial factors, and inequalities are
fundamental factors operating at the societal/macro level that underlie
and influence the health and well-being of individuals and populations
via multiple pathways by providing them with differential access to
power, information, and resources (Link & Phelan, 1995).
Fundamental factors in turn influence intermediate factors. Table 2.1
presents the intermediate factors consisting of both the built environ-
ment and social context. There are two important points worth empha-
sizing about the community/meso level. First, it is here that interventions
may be the most effective in mitigating the more entrenched factors at
the societal level (e.g., ageism) to improve the health and well-being of
marginalized groups. Second, most of the interventions at the communi-
ty/meso level necessarily involve organizations and agencies outside the
public health sector. Hence, interdisciplinary, participatory collabora-
tion among urban planners, civic organizers, educators, journalists, and
public health practitioners may hold the greatest promise for devising
effective and sustained community-based interventions.
The more proximate factors influencing health and well-being at
the interpersonal level are stressors/buffers, health behaviors, and social
integration. This is the more familiar terrain of public health, although
Meyer (2003) warns that relying too much on the coping abilities of the
oppressed rather than the transgressions of the oppressor could lead to
disregard for the need for important political and structural changes.
Finally, the last column in Table 2.1 is labeled health and well-being
and lists a wide range of health outcomes, while also identifying various
measures of well-being. It is important to emphasize that health and
well-being can be measured at both the individual and population levels;
that is, societal, community, and interpersonal determinants may affect
the health and well-being of individual members of society as well as
various populations within it.
To illustrate how Table 2.1 may be used to trace pathways through
which health communication tools at various levels may affect individual
and population health, case studies from our ongoing work at the Har-
lem Health Promotion Center are presented next. The hope is that these
Chapter 2 Emerging Demographics and Health Care Trends 27
examples will spur readers to think about ways that new media may be used
at diverse levels to reach other communities and populations of interest.
Health Communication Tools by Level of Infl uence
The examples of health communication tools discussed here cover, in
order, fundamental determinants at the societal/macro level, intermedi-
ate determinants at the community/meso level, and proximate determi-
nants at the interpersonal/micro level of health and well-being at the
individual and population levels. Yet these levels are fluid and changing,
and it is important to keep in mind the dynamic nature of the model
(Schulz & Northridge, 2004).
Get Healthy Harlem Web Site
To address the need for high-quality, culturally relevant information that
does not require a high level of literacy, the Harlem Health Promotion
Center (one of the 33 prevention research centers funded by the Cen-
ters for Disease Control and Prevention—see www.healthyharlem.org)
and Digital Partnerships for Health (an alliance of community and aca-
demic partners) are developing an innovative Web-based health portal.
Given broad access to Web sites, this project may usefully be considered
a health communication tool at the societal/macro level.
When completed, Get Healthy Harlem: Your Door to Health and
Wellness in Harlem (see www.GetHealthyHarlem.org) will offer infor-
mation focusing on obesity written by health professionals as well as
community members. Planned features include information about
health, nutrition, exercise, and the environment in Harlem; tips from
health experts in Harlem; personal stories from people in Harlem who
are working to improve their health; tools for learning how healthy the
users are and how healthy they could be; links to credible health and
wellness information; a listing of Harlem restaurants, fitness centers,
gardens, and other community resources; opportunities to meet friends
online; and information on how to join online groups and discussions.
Harlem Smoke-Free Home Campaign
In October 2007, the New York City Department of Health and Mental
Hygiene (2007), in collaboration with community partners (including
the Harlem Children’s Zone Asthma Initiative and the Mailman School
www.healthyharlem.org
www.GetHealthyHarlem.org
28 Health Communication in the New Media Landscape
of Public Health) launched the Harlem Smoke-Free Home campaign to
address the issue of secondhand smoke in East and Central Harlem (see
www.nyc.gov/html/doh/html/pr2007/pr087-07.shtml). Because it relies
on advertisements in subway stations and check cashing establishments,
this campaign may be considered a health communication tool at the
community/meso level.
The campaign also includes radio promotion and DJ announcements
at events throughout Harlem. Produced in English and Spanish, the
advertisements feature African American and Latino children suffering
from secondhand smoke–related illnesses such as asthma, ear infections,
allergies, and chronic cough.
My Life, My Decision
Blending form with function, the DVD titled My Life, My Decision de-
veloped by the Harlem Health Promotion Center uses realistic plotlines
to entertain and educate young adults regarding Plan B, an emergency
contraceptive that contains 1.5 milligrams of the hormone levonorgestrel
(Allen & Goldberg, 2007). Because the DVD is intended to be utilized in
concert with social support from friends, family, and clinical staff as part
of Project STAY (Services to Assist Youth), it may be classified as a health
communication tool at the interpersonal/micro level. However, the initia-
tive around Plan B also utilizes Web sites and community venues, exem-
plifying how health communication tools at multiple levels may work in
concert to improve individual and population health and well-being.
Filmed in and around Harlem, My Life, My Decision features six
Black and Latino young adults who are trying to avoid unintended preg-
nancies. For instance, while Sheila and Victor normally practice safe sex,
an unexpected condom break forces them to seek a backup plan. And
while Cynthia normally relies on the birth control pill for pregnancy pre-
vention, when her close friend Nia experiences a post-sex dilemma similar
to her own, they both need to find a way to prevent pregnancy after sex.
The aim of this health communication tool is for audience members to feel
engaged, informed, and interested in obtaining more information about
reproductive health care services, including emergency contraception.
ElderSmile Digital Maps
For the past 5 years, an interdisciplinary team at the Columbia University
College of Dental Medicine has been dedicated to improving oral health
www.nyc.gov/html/doh/html/pr2007/pr087-07.shtml
Chapter 2 Emerging Demographics and Health Care Trends 29
care access and services for seniors in Harlem and Washington Heights,
New York City through an initiative known as ElderSmile. Digital maps
created by architectural geographic information system software are
effective health communication tools that are used to both document
and analyze oral health at the population level (see “ARCgis: Layers and
Layers of Data,” 2005).
For instance, Borrell, Northridge, Miller, Golembeski, Spielman,
Sclar, and Lamster (2006) found that Black racial identity, Hispanic
ethnicity, and poverty tend to co-occur spatially in northern Manhattan
and the south Bronx. Furthermore, a spatial/transportation barrier may
inhibit access to dental care among seniors who live in these areas. The
use of multiple layers of local information juxtaposed in digital maps is
able to scientifically inform planning as health care workers determine
locations for screening and treatment centers to provide oral health care
for seniors.
EMERGING DEMOGRAPHICS
From 1990 to 2000, the population center of the United States shifted
12 miles south and 33 miles west, from a location near Steelville, Mis-
souri, to one near Edgar Springs, Missouri (U.S. Census Bureau, 2000).
The concomitant population growth of 32.7 million people between
1990 and 2000 represents the largest census-to-census increase in U.S.
history (U.S. Census Bureau, 2001a).
The Aging of the U.S. Population
According to the U.S. Census Bureau (2000), the median age of the U.S.
population in 2000 was 35.3 years, the highest median age recorded for
the United States. Cohort effects are evident within this overall trend.
For instance, relatively low birth rates during the late 1920s and early
1930s, the years of the Great Depression, meant that a relatively small
number of people celebrated their 65th birthday in time for Census
2000, and for the first time in the history of the U.S. census, the popula-
tion ages 65 years and older increased at a slower rate than the popula-
tion as a whole. On the other hand, as the baby boomers (defined as
people born in the years after World War II from 1946 to 1964) began
passing their 45th birthdays, the population between the ages of 45 and
49 years swelled 49% in just one decade (from 1990 to 2000).
30 Health Communication in the New Media Landscape
A U.S. Census Bureau report titled “We the People: Aging in the
United States” (2004b) provides other useful information from Census
2000 regarding people ages 65 years and older that may be important
to the design of targeted health communication strategies. Women out-
number men in this age range (20.6 million women compared with 14.4
million men), and the sex ratio (number of males per 100 females) drops
steadily with increasing age. While the sex ratio for people ages 65 to 74
years was 82 in 2000, it declined to 41 for people ages 85 and older in
2000, representing more than two women for every man.
In terms of living arrangements, 28% of people ages 65 years and
older lived alone, compared with 10% of the total population (U.S. Cen-
sus Bureau, 2004b). Close to 7.5 million older women lived alone, as
did 2.4 million older men. More than one of four grandparents ages 65
years and older living with their grandchildren under age 18 years were
caregivers for their grandchildren.
With regard to the five types of disabilities tracked by the U.S. cen-
sus (sensory, physical, mental, self-care, and difficulty going outside the
home), physical disabilities were the most prevalent, at 28.6% for those
ages 65 years and older, compared to only 8.2% for those ages 5 to 64 years
(U.S. Census Bureau, 2004b). Almost half (42%) of the population ages 65
years and older reported some type of long-lasting condition or disability
in Census 2000. Women are more likely than men to become disabled, and
when women experience disability, they are less likely than men to recover
(Laditka & Laditka, 2002). As a result, women have both higher disability
incidence and higher disability prevalence than men at all ages (Becket
et al., 1996; Leveille, Pennix, Melzer, Izmirlian, & Guralnik, 2000).
The growing proportion of the elderly is a direct effect of declining
mortality, but also of declining fertility, which results in a greater num-
ber of seniors; this also means that they constitute a greater proportion
of the population (Albert, 2008). For instance, between 1960 and 2004,
overall mortality in the United States declined from about 1,400 to 800
deaths per 100,000 persons per year (Federal Interagency Forum on
Aging Related Statistics, 2000). According to Albert (2008), this extraor-
dinary reduction in mortality occurred across the entire life span, result-
ing in an impressive gain in life expectancy from 70 years to 76 years over
the same time period (1960–2004).
Increasing Racial, Ethnic, and Immigrant Diversity
The U.S. federal government considers race and Hispanic origin to be
two separate and distinct concepts (U.S. Census Bureau, 2001b). For
Chapter 2 Emerging Demographics and Health Care Trends 31
this reason, race, ethnicity, and immigration status are considered col-
lectively in this subsection. The question on Hispanic origin in Census
2000 asked respondents if they were Spanish, Hispanic, or Latino, while
the question on race asked respondents to report the race or races they
consider themselves to be: White, Black or African American, American
Indian or Alaska Native, Asian, Native Hawaiian or other Pacific Islander,
or some other race.
Note that the Census 2000 questions on race and Hispanic origin
are based on self-identification, reflecting the social, political, and eco-
nomic construction of these concepts, rather than disproven “race-as-
biology” categories (Goodman, 2000). Furthermore, these categories
were revised for Census 2000 to reflect the increasing diversity of the
U.S. population and to maintain the ability to monitor compliance with
civil rights laws (Wallman, Evinger, & Schechter, 2000); these data from
Census 2000 thus are not directly comparable with data from the 1990
census or earlier censuses (U.S. Census Bureau, 2001b).
According to data from Census 2000, 281.4 million people resided in
the United States, of whom 35.3 million, or about 13%, self-identified as
Latino (U.S. Census Bureau, 2001b). The overwhelming majority (nearly
98%) of respondents reported being only of one race. Of those, 75%
reported being White, 12% reported being Black or African American,
5.5% reported being some other race (predominantly people of Hispanic
origin), 4% reported being Asian, just under 1% reported being Ameri-
can Indian or Alaska Native, and 0.1% reported being Native Hawaiian
or other Pacific Islander.
To further understand the diversity of the U.S. population, it is
useful to look at three other Census 2000 measures, namely, foreign
born, ancestry, and language use. The U.S. Census Bureau considers
anyone who is not born a U.S. citizen to be foreign born (U.S. Census
Bureau, 2003a). Of the 281.4 million people measured in Census 2000,
31.1 million, or 11.1%, were foreign born. In the decade between 1990
and 2000, the foreign-born population increased 57%, compared with
increases of 9.3% for the native population (i.e., those born in the United
States, Puerto Rico, or a U.S. island area, or children born abroad of a
U.S. citizen parent) and 13% for the total U.S. population. The majority
(52%) of the foreign-born population in Census 2000 were from Latin
America (Central America including Mexico, the Caribbean, and South
America), and just over half of the foreign-born population lived in three
states, namely, California, New York, and Texas.
Ancestry in the U.S. census is a conflated measure, since it has dif-
ferent meanings for different people, including where their ancestors
32 Health Communication in the New Media Landscape
are from, where they or their parents originated, and how they see them-
selves ethnically (U.S. Census Bureau, 2004a). Notwithstanding this
important limitation, it is worth noting that the number of people with
the best-represented European ancestries has decreased over the past
decade, while the number of individuals with African American, His-
panic, and Asian ancestries has increased.
Finally, both the number and percentage of people in the United
States who spoke a language other than English at home increased in the
decade from 1990 to 2000 (U.S. Census Bureau, 2003a). In 2000, 18% of
the total population ages 5 years and older (47.0 million people) reported
that they spoke a language other than English at home, compared with
14% (31.8 million) in 1990 and 11% (23.1 million) in 1980 (U.S. Census
Bureau, 2003b). The three major language groups other than English
are Spanish (including those who speak Ladino), other Indo-European
languages (most languages of Europe and the Indic languages of India),
and Asian and Pacific Island languages (including Chinese, Korean, Jap-
anese, and Vietnamese).
The implications of the increasing diversity of the U.S. population for
health communication in the new media landscape are enormous. The
majority of U.S. households have personal computer and Web access
(U.S. Census Bureau, 2005), and as of December 2006, over 18.5 billion
text messages were being sent every month—an increase of 250% each
year for the previous 2 years (Kaiser Family Foundation, 2007).
HEALTH CARE TRENDS
This section was written at the close of 2007, when health care delivery
in the United States was severely stressed. By the time you read this
volume, a new U.S. federal administration will likely be in office. While
there are a host of health care issues that demand attention, two major
concerns will likely dominate upcoming policy debates, namely: how
best to care for increasing numbers of seniors and how best to eliminate
growing disparities in health care access and treatment between seg-
ments of U.S. society.
Caring for Increasing Numbers of Seniors
The increasing numbers of U.S. seniors will require a new world of
health care and social service delivery, transportation and housing
Chapter 2 Emerging Demographics and Health Care Trends 33
arrangements, and much more to meet the complex needs of those
requiring care (Albert, 2008). According to the National Center for
Health Statistics (2006), U.S. men could expect to live 3 years longer
and U.S. women could expect to live 1 year longer in 2003 than they did
in 1990.
With longer life expectancy comes increasing prevalence of chronic
diseases and conditions that are associated with aging (National Center
for Health Statistics, 2006). Primary care sensitive conditions such as
diabetes, hypertension, and asthma produce cumulative damage if not
properly treated, while diseases such as emphysema and certain types of
cancers develop slowly or after long periods of exposure to irritants and
toxins.
A life course approach to prevention and treatment has proved
insightful for a range of chronic diseases and conditions, including oral
diseases and conditions (Ben-Shlomo & Kuh, 2002; Northridge & Lam-
ster, 2004). This theory posits that health in later life results from the
lifelong accumulation of advantageous and disadvantageous experiences
at the personal, interpersonal, community, and societal levels (North-
ridge et al., 2003). These experiences differ according to a range of fac-
tors, including but not limited to gender and sexuality; race, ethnicity,
and immigration status; and socioeconomic conditions such as educa-
tion, income, wealth, and occupation. This is true not only for biological
and psychological determinants, but also for social and behavioral deter-
minants, as encompassed in contemporary ecological theories of health
and well-being (see, e.g., Krieger, 2001).
A public health model favors directing more societal resources
toward the prevention or delayed onset of disabling diseases and con-
ditions rather than toward medically and technologically-intensive care
(Crimmins, Saito, & Reynolds, 1997). This view is supported by a grow-
ing body of evidence that demonstrates that controlling blood pressure,
maintaining appropriate weight, abstaining from smoking, and being
physically active lead to lowered prevalence of illness and impairment
(Reed, Foley, White, Heimovitz, Burchfiel, & Masaki, 1998; Vita, Terry,
Hubert, & Fries, 1998).
According to Laditka and Laditka (2002), “The distinction between
‘active’ and ‘inactive’ life disguises a continuum of functional ability”
(p. 179). Regardless of the thresholds set for defining disability, long-term
care will no doubt exert pressing demands on U.S. society in the coming
decades (Laditka & Laditka, 2002). As the large cohort of baby boomers
ages, they will require more formal and informal care, in the aggregate,
34 Health Communication in the New Media Landscape
regardless of lifestyle changes, research advances, or morbidity compres-
sion (Laditka & Laditka, 2002). Unfortunately, not all segments of U.S.
society have equal access to quality health care or treatment for acute
and chronic diseases and conditions.
Growing Disparities in Health Care
Access and Treatment
For more than a decade, U.S. agencies have documented and confront-
ed inequalities in health care among population groups across a spec-
trum of diseases and conditions. Perhaps the most influential report
published to date is Unequal Treatment: Confronting Racial and Ethnic
Disparities in Health Care (National Academy of Sciences, 2002). The
accumulated evidence underscores the existence of racial and ethnic
differences in the quality of health care that are not due to access-related
factors or clinical needs, preferences, and appropriateness of inter-
vention (National Academy of Sciences, 2002). In a thoughtful review
examining the unequal burden of pain, two sources of disparities were
delineated: health care systems and the legal and regulatory climate in
which they operate, and discrimination, for example, biases, stereotyp-
ing, and uncertainties in clinical communication and decision making
(Green et al., 2003).
Together and separately, the authors of this chapter have dedicated
their careers to understanding and addressing these two sources of dis-
parities through community-based participatory research and practice
initiatives at the Harlem Health Promotion Center. Innovative service
delivery models addressing disparities in health care systems and the
legal and regulatory climate in which they operate have been designed
and evaluated. For instance, Project STAY (Services to Assist Youth) is
a haven for young people at risk for or living with HIV/AIDS (see www.
projectstay.net). Its comprehensive services fit both the lifestyles and life
stages of youths and young adults.
As part of an ongoing project at the Harlem Health Promotion
Center, Xavier Ford, a talented health educator who works for a com-
munity-based organization, developed a technique that uses computer
animation to enable teenagers to communicate with one another via text
messaging. In his DVD titled Cells in the City, the teenage actors are
never shown on screen—we only see their cell phones, accompanied by
both the actors’ voices and written messages. A series of vignettes around
HIV counseling and testing are currently being developed. Youths are
www.projectstay.net
www.projectstay.net
Chapter 2 Emerging Demographics and Health Care Trends 35
involved in developing the messages for the vignettes, while also learn-
ing computer animation and storyboarding necessary to create finished
media products.
In terms of addressing discrimination in health care service and
delivery, struggles experienced at the Harlem Family Asthma Center,
especially the difficulties encountered around eligibility for health care
coverage by poor men with asthma, have resulted in the provision of
advocacy for health care delivery that embraces the diversity of U.S.
families (Hutchinson, Northridge, Lebovitz, Northridge, Vaughn, &
Vaughan, in press). Other efforts to focus attention on the egregious
disparities in health care for men of color have ranged from funda-
mental causes such as confronting racism and sexism to improve men’s
health (Treadwell, Northridge, & Bethea, 2007b), to proximate causes
such as providing oral health care to prisoners (Treadwell, Northridge,
& Bethea, 2007a).
CHALLENGES AND OPPORTUNITIES
The following chapters are devoted to health communication in the new
media landscape. A few reflections on the current challenges and pos-
sible new strategies are offered here.
First, the aging of the U.S. population means, at the broadest
level, that age-friendly health communication strategies ought to be
encouraged (Feldman, Oberlink, Simantov, & Gursen, 2004). For
instance, inadequate health literacy, as measured by reading fluency,
independently predicts all-cause mortality and cardiovascular death
among community-dwelling elderly persons (Baker, Wolf, Feinglass,
Thompson, Gazmararian, & Huang, 2007). However, limited literacy
skills affect all age and population groups in the United States (Davis
& Wolf, 2004). In moving beyond describing the problem to devising
solutions, it may be advantageous for those developing tailored inter-
vention strategies to ensure that they can be adapted to changing abili-
ties as people age.
Second, for population groups that have been historically oppressed,
notably recent immigrants, mainstream approaches to health commu-
nication may be ineffective. Elder (2003) advocates using community
health advisors to mediate health communication messages for recent
immigrants in order to improve comprehension and promote accep-
tance. A better understanding of who is effective in delivering health
36 Health Communication in the New Media Landscape
messages among different population groups and what approaches work
best across settings may help improve public health for those most in
need of information and services.
Third, the fragmentation of our health care system has resulted in
rising costs, inefficiency, preventable errors, and poor quality of care
(Halamka Overhage, Ricciardi, Rishel, Shirky, & Diamond, 2005). A
large multi-stakeholder collaborative titled Connecting for Health advo-
cates creating a decentralized and federated model of health information
exchange built upon a minimum set of uniform standards and policies,
rather than creating a uniform health information infrastructure on a
national scale (Halamka et al., 2005). Regardless of the model employed,
it is imperative to ensure that medical and dental histories are not lost
when people move to new communities or experience other dislocations.
Furthermore, improved uniformity of health information will enhance
public health tracking, quality evaluation, and health services research
in the future. Clearly, policy reforms are needed, including those in the
health care, education, transportation, and housing arenas, in order to
increase equity in U.S. society.
CALL TO ACTION
In this chapter, the emerging demographics and health care trends to
look for in the coming decades have been reviewed in order to lay a
foundation for the ensuing chapters in this volume devoted to health
communication strategies in the new media landscape. Those of us de-
voted to improving the health and welfare of the U.S. population need
to ensure we move beyond the academy to critically engage with the
public sector, the private sector, and community stakeholders, including
religious groups (Frodeman & Mitcham, 2007). According to Frode-
man and Mitcham (2007), “Our academic research portfolio must in-
clude an account of how to effectively integrate knowledge within the
decision-making context faced by governments, businesspeople, and
citizens” (p. 513).
It is important to remember that, inevitably, any constructive
changes in the current health care system will necessarily involve pol-
itics and bring up societal values that underlie the debate. As Duane
(2007) recently reminded us, “In our democracy, we have the power to
implement policies that promote genuine public health. True patriotism
demands that we do so” (p. 2123).
Chapter 2 Emerging Demographics and Health Care Trends 37
REFERENCES
Albert, S. (2008). The aging U.S. population. In I. B. Lamster & M. E. Northridge (Eds.),
Improving oral health for the elderly: An interdisciplinary approach (pp. 3–13). New
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41
3
Journalists, communication researchers, health professionals, and others
have used the mass media to raise public awareness of health problems,
to create positive attitudes toward healthful behaviors, and to modify un-
healthful behaviors. As health communication researchers have pointed
out, “Trying to promote healthy behaviors that offer delayed or uncertain
benefits and also entail immediate deprivations makes these efforts even
more challenging” (Kar, Alcalay, & Alex, 2001, p. 110). This may be even
more challenging for health communication researchers whose mission
it is to reach the underserved. Endeavors to reach the underserved may
be stymied, as the underserved typically do not have the same economic
and community resources as those from higher socioeconomic groups.
This sometimes makes it more difficult for people to implement health
recommendations. In addition, communication professionals may need to
address the underserved through diverse media channels (e.g., radio, tele-
vision, billboards, transit advertising) using culturally relevant communi-
cation, and not all professionals have been trained to be culturally aware.
This chapter summarizes the results of recent mass media health
campaigns that have targeted U.S. ethnic audiences and explores what
researchers know about media channels and content created for U.S.
ethnic audiences. Health disparities 1 are defined “as racial or ethnic
differences in the quality of healthcare that are not due to access-related
Communication Strategies for
Reducing Racial and Cultural
Disparities
MARÍA E . LEN-RÍOS
42 Health Communication in the New Media Landscape
factors or clinical needs, preferences, and appropriateness of interven-
tion” (Smedley, Stith, & Nelson, 2005, pp. 3–4). In other words, many
people who belong to U.S. racial and ethnic groups and have access to
health care get poorer care. Researchers have identified a variety of rea-
sons why U.S. racial and ethnic groups receive poorer care, including
discrimination, prejudice, poor doctor–patient communication, health
care system practices, and late detection of disease, as well as the fact
that they are provided with fewer treatment options by health care pro-
viders (Mayberry, Mili, & Ofili, 2002; Smedley et al., 2005).
The mass media, in particular, can play a role in reducing racial and
cultural health disparities by exposing instances of systemic discrimina-
tion and prejudice that are responsible for the persistence of unequal
health care and by questioning policies that maintain the status quo, by
alerting policy makers to health care inequities, and by informing audi-
ences about new prevention recommendations and treatments to affect
public attitudes and behaviors. Research from the fields of journalism
and mass communication and psychology has demonstrated that there
is a connection between what is reported in the mass media and public
knowledge about issues (Cho & McLeod, 2007; Gaziano, 2000; Gaziano
& Horowitz, 2001; Tichenor, Donohue, & Olien, 1970), attitudes and
perceptions of health issues (Jones, Denham, & Springston, 2007; Mar-
cus, Owen, Forsyth, Cavill, & Fridinger, 1998), behavioral intentions
(Detweiler, Bedell, Salovey, Pronin, & Rothman, 1999; Len-Ríos & Qiu,
2007), and behaviors (Snyder & Hamilton, 2002). This chapter analyzes
the academic literature on mass media health communication campaign
efforts to reach underserved U.S. racial and ethnic groups.
DISPARITIES AND INEQUITIES
Early on, the media’s role in reporting health disparities focused on ex-
posing institutional prejudice and unequal medical treatment provided to
U.S. racial and ethnic minorities, particularly Blacks, and advocating social
justice. Journalists put the spotlight on inequities, which led to a major
public response. For example, on July 25, 1972, Associated Press reporter
Jean Heller (1972) broke the story about the ethically flawed Tuskegee
syphilis experiment in which African American men were not told that
they had syphilis and were not offered or denied treatment by researchers
who wanted to study the natural progression of the disease. The front page
headline of the New York Times read “Syphilis Victims in U.S. Study Went
Chapter 3 Communication Strategies 43
Untreated for 40 Years.” Its effect of creating mistrust of the health care
system in African American communities still reverberates today.
More recently, in 1996, the Centers for Disease Control and Preven-
tion had to explain why it had tested a measles vaccine on 1,500 6- to 9-
month-old Black and Hispanic babies (“Vaccine Study Faulted,” 1996).
The Los Angeles Times, the Washington Post, and other newspapers
carried the story. Observers questioned whether these babies and their
parents would have received the same care if they had been upper-
middle-class Whites.
On June 13, 2007, Charles Gibson on ABC’s World News Tonight
reported that Edith Isabel Rodriguez died at Martin Luther King Jr.–
Harbor Hospital in Los Angeles after waiting more than 45 minutes to
be seen in the hospital’s emergency room (Associated Press, n.d.). Her
death was called an accident—a mistake in an overburdened and mis-
managed health system that largely served a poor ethnic community.
Again, critics asked whether this would have happened in an upper-
middle-class White community.
These types of news stories illustrate to ethnic groups how the sys-
tem fails to work for them. Cases like these also provide justification for
their mistrust of the U.S. health care system.
RESEARCH ON HEALTH COMMUNICATION AND U.S.
RACIAL/ETHNIC GROUPS
Several scholars have written reviews of mass media health communica-
tion campaigns intended for racial/ethnic populations. This literature
focuses on health message design (framing), differences in audience
learning from mass media channels (knowledge gaps), media use (media
dependency theory, uses and gratifications theory), and media’s effects
on attitudes and behaviors (diffusion of innovation, social cognitive
theory).
A review by Hornik and Ramirez (2006) concluded that no studies
have effectively looked at whether racial and ethnic segmentation (i.e.,
narrowing the target audience of a campaign message to a smaller sub-
set of the general population) in communication campaigns has proved
effective. Racial and ethnic segmentation is meant to “increase the rel-
evance and appeal of . . . advertising to specific racial or ethnic groups”
(Davis, 1997, p. 448). Hornik and Ramirez argue that the problem is that
most studies do not properly design, measure, or carry out evaluation of
44 Health Communication in the New Media Landscape
their interventions. Marcus and associates (1998) reviewed mass media
campaigns between 1983 and 1997 on physical activity interventions and
reported that the sole study in their sample that included a minority
population in its design and made substantial use of mass-mediated mes-
sages did not provide an analysis of its effects on that population.
Researchers have paid much more attention to media use and chan-
nel preferences of ethnic and racial groups and to the cultural relevance
of health messages than they have to implementing and measuring
health communication campaign effects. Part of the reason for this is
lack of funds, because media campaigns are costly. The following sec-
tions review mass media health communication campaigns directed
toward U.S. racial and ethnic groups, and the media channels that best
serve people belonging to U.S. racial and ethnic groups.
MASS MEDIA HEALTH CAMPAIGNS
FOR U.S. ETHNIC/RACIAL GROUPS
Media researchers acknowledge that evaluating health communication
campaign effectiveness in general is difficult because there is no com-
mon definition for a health campaign and because campaign elements
(e.g., time frame, message saturation, levels of analysis) vary from cam-
paign to campaign (Salmon & Atkin, 2003). The assumption that is often
made in the health communication literature is that health disparities
are caused by a lack of information due to communication inequalities.
Viswanath and Emmons (2006) define communication inequalities “as
differences in the generation, manipulation, and distribution of infor-
mation among social groups; and differences in (a) access and use, (b)
attention, (c) retention, and (d) capacity to act on relevant information
among individuals” (p. S242). The assumption is that if communication
and capacity are increased, health outcomes will improve.
Not all researchers agree that ethnic targeting through the mass media
is an effective means to deliver health messages to U.S. ethnic and racial
groups. For instance, some argue that there is no evidence that racial and
ethnic segmentation is more effective than other forms of message target-
ing and suggest that it may not be worth the expense (Hornik & Ramirez,
2006). In contrast, others argue that general audience targeting fails to
reach ethnic groups (Wilkin & Ball-Rokeach, 2006) and that interpersonal
channels and ethnic media are most effective. Still other researchers show
that the effectiveness of mass media campaigns depends on whom you
Chapter 3 Communication Strategies 45
want to reach. For instance, Salmon and Atkin (2003) argue that commu-
nity opinion leaders may use general audience media to gather informa-
tion and then bring those messages back to their communities. It is likely
that each of these perspectives has merit, depending on the message and
intended audience. Message appropriateness and channel selection are
largely dependent on audience characteristics. Important individual-level
factors include socioeconomic status, education level, stage of readiness
for adopting behavior change, and level of acculturation into mainstream
society (Hornik & Ramirez, 2006; Soto, 2006).
Effects Research
This section synthesizes the results of recent mass media health com-
munication campaigns that have sought to affect the knowledge levels,
attitudes, and behaviors of members of U.S. racial and ethnic groups.
(It should be noted that the size, duration, and conceptualization of the
campaigns are not directly comparable.) Some are interventions that
have used customized magazines and guides, which do not fit tradi-
tional definitions of mass media. 2 There have been few actual mass
media campaigns that target ethnic groups and, as Hornik and Ramirez
(2006) argue, fewer still that provide a “comparison between segmenta-
tion and nonsegmentation by race or ethnicity while comparing progress
between racial groups” (p. 874).
Beaudoin, Fernandez, Wall, and Farley (2007) used broadcast and
outdoor advertising to reach African American women and motivate them
to increase their intake of fruits and vegetables and increase walking. The
goal was to reduce the risk of cardiovascular disease among African Amer-
icans in New Orleans. The advertising buys were at high saturation levels,
meaning the ads appeared frequently to ensure they were seen. Pre- and
post-campaign surveys of area residents showed increased positive atti-
tudes toward walking and improved eating habits, but the data indicated
that the advertising campaign did not influence actual behavior.
In an effort to reduce children’s exposure to harmful lead paint, the
Hartford Health Department implemented a campaign that used public
relations tactics (e.g., displays at a local hardware store, an art compe-
tition) in conjunction with newspaper, outdoor, and transit advertising
(McLaughlin, Humphries, Nguyen, Maljanian, & McCormack, 2004).
McLaughlin and associates surveyed the campaign’s effects on parents
of children who attended nine early learning centers in Hartford,
Connecticut. Eighty-five percent of respondents were either Black or
46 Health Communication in the New Media Landscape
Hispanic. Results showed that the best-remembered messages were
newspaper advertisements (63%), transit advertising (60%), billboards
(60%), and posters on sanitation trucks (40%). In addition, half said that
they acted on the information from the newspaper advertisement, and
nearly one-third said that a billboard caused them to take some preventa-
tive action. The most frequently reported outcome behaviors were talk-
ing with a landlord (65%) and asking a doctor about lead testing (58%).
To address cervical cancer health disparities among Vietnamese
American women, researchers launched an intervention in California
(Mock et al., 2007). Participants either received a combination of educa-
tion from lay workers about cervical cancer and exposure to a mass media
campaign or only had exposure to a mass media campaign. The media
campaign used 15 advertisements that ran in Vietnamese newspapers,
radio, and television, as well as public relations tactics such as publicity-
generated newspaper articles, booklets, and calendars. Results showed
that women in the combined intervention group were more knowledge-
able about cervical cancer and were more likely to get an updated Pap
test than those in the media-only group. Analysis of the mass media com-
ponents showed that those who had read a newspaper article about Pap
tests were also more likely to get a Pap test.
Another study conducted by Wray, Hornik, Gandy, Stryker, Ghez,
and Mitchell-Clark (2004) in 1998 and 1999 used 90-second public ser-
vice announcements to attempt to prevent domestic violence in four
African American communities. Results of the study were inconclu-
sive because the local radio stations either did not air the public service
announcements or did not air them with sufficient frequency to reliably
assess the results. Their study demonstrates that campaign effects may
be more difficult to achieve when the saturation and frequency of mes-
sage exposure cannot be controlled, as is the case with paid advertising
or the use of brochures and printed materials.
A campaign that sought to increase the number of older American
Indians who get influenza vaccinations used tribal radio in combina-
tion with other intervention activities (Traeger, Thompson, Dickson,
& Provencio, 2006). However, the unique contributions of radio to the
campaign outcomes were not reported.
Several study interventions created printed publications (brochures
or magazines) to deliver health information to women of color. Bell and
Alcalay (2001) found that White and Black women learned more from the
wellness guides they produced than did Hispanic women. In addition,
when the level of acculturation was taken into account, acculturated
Chapter 3 Communication Strategies 47
Hispanic women learned more about and had a better understanding of
how to acquire health information they needed than did less accultur-
ated Hispanics. Kreuter and Haughton (2006) created an intervention
that delivered magazines that were tailored by culture, behavior, or a
combination of culture and behavior to African American women. They
found that the combination messages were most strongly associated with
getting African American women to eat more fruits and vegetables and
get a mammogram. In regard to the latter, the data also revealed that
the women most apt to get a mammogram were those who had previ-
ously had a mammogram but had fallen behind in scheduling their next
one. Thus the media effect was greater for motivating people to repeat a
behavior than to exhibit a new one.
The results from these studies show that mainstream and targeted
media channels can be used to raise awareness among U.S. racial and
ethnic populations about health issues and to encourage preventative
behaviors. It appears that advertising (Beaudoin et al., 2007; McLaugh-
lin et al., 2004), printed media such as brochures and magazines (Bell
et al., 2001; Kreuter & Haughton, 2006), and a combination of tactics
(Mock et al., 2007) may have advantages over efforts that rely solely
on non-paid media tactics such as public service announcements (Wray
et al., 2004), which rely on the cooperation of media partners. When
attitudes were measured, it was found that the media campaigns also
appeared to increase positive attitudes (Beaudoin et al., 2007) and per-
ceptions of self-efficacy (Bell et al., 2001). The effects of the campaigns
on behavior were mixed, with some campaigns not affecting behavior
(Beaudoin et al., 2007), some increasing behavior among those more
predisposed (Kreuter & Haughton, 2006; Mock et al., 2007), and some
showing multiple behaviors attributed to the campaign (McLaughlin
et al., 2004). In considering behavior change and campaign effectiveness,
it is important to reflect on the level of change requested of the target
audience and the difficulty in implementing that change. For instance,
it is easier to talk to one’s landlord about lead paint (McLaughlin et al.,
2004) or get a Pap test (Mock et al., 2007) than it is to implement a
dietary change and exercise program (Beaudoin et al., 2007).
MASS MEDIA CHANNELS
There are several ways to increase cultural message relevance in health
communication messages. This can be done through the choice of
48 Health Communication in the New Media Landscape
language (e.g., English versus Spanish), symbolism (e.g., evoking the
buffalo or an eagle in communications with certain American Indian
tribes), visual representation (e.g., showing members of the ethnic group
being targeted), and presentation of values that are closely held by vari-
ous groups (e.g., religiosity, reverence for elders). But one of the best
ways is selection of appropriate media channels (general audience versus
ethnic media, or TV versus newspaper).
Studies of media channels and U.S. ethnic and racial minorities
address two topics—how racial/ethnic groups access and use mass media
and the content of health news consumed by U.S. ethnic and racial group
members. The bulk of the existing research addresses African Americans
and Hispanics. This is because they are the two largest ethnic minority
groups in the United States, each group shares a common language, and
each group has well-developed ethnic media (e.g., newspapers, maga-
zines, and television channels). In fact, according to the 2008 Bacon’s
Newspaper Directory (2007) listings, there are 219 U.S. African Ameri-
can newspapers and 401 U.S. Hispanic newspapers. The vast majority
are community newspapers. Three of the African American newspapers
and 18 of the Hispanic newspapers are published daily. A 2006 report
by the Latino Print Network identified 768 Hispanic newspapers, 38 of
them dailies, but these include Puerto Rican and Mexican border-town
newspapers (Whistler, 2007).
Fewer campaigns target Asian Americans as a monolithic, or pan-
ethnic, group because they include a variety of diverse cultural groups
that speak many languages. American Indians, although also under-
served, are comparatively few in number, are heterogeneous, and do not
populate large cities in great numbers, so they continue to be underrep-
resented in research. In addition, there are few pan-ethnic media chan-
nels that reach Asian Americans or American Indians. The following
section explores what we know about how racial/ethnic groups use mass
media and what is in the media content regarding health information.
Mass Media Use
When it comes to developing health communication campaigns for U.S.
racial and ethnic groups, some campaigns approach racial and ethnic
minority groups as homogenous, while others look at individual charac-
teristics within a racial or ethnic group (e.g., level of ethnic identity, so-
cioeconomic status). What is clear is that ethnic identity and individual
characteristics are more complex than they are often treated. For instance,
Chapter 3 Communication Strategies 49
a White Cuban American in Miami may have a very different cultural ori-
entation than a recent immigrant from Mexico to Los Angeles. Research
has also shown that like White populations, less educated ethnic group
members are less likely than those with college educations to rely on print
media materials (Ribisl, Winkleby, Fortmann, & Flora, 1998).
Since the U.S. census declared Hispanics the fastest-growing U.S.
ethnic group, marketers and researchers have begun to research the
media habits and behaviors of what has been dubbed the “Hispanic mar-
ket.” Market researcher Isabel Valdés (2000) shows how one commercial
research group divides Hispanics into six groups according to their level
of proficiency in English and Spanish but points out that “Most Hispan-
ics use both English and Spanish media” (p. 28). Advertising researchers
have looked at Hispanic language preferences for ads by asking Hispan-
ics with different levels of language proficiency about their preferences.
For instance, Koslow, Shamdasani, and Touchstone (1994) found that
bilingual and English-dominant Mexican Americans preferred English-
dominant bilingual advertising messages because they felt that the use
of Spanish showed the advertiser’s cultural sensitivity. Spanish-dominant
participants preferred Spanish-only ads.
Mass communication researchers have similarly researched where
Hispanics get health information. Data show that Hispanics get a great
deal of health information from the media and act on the information
they consume (Brodie, Kjellson, Hoff, & Parker, 1999). In surveys of
Hispanics, African Americans, and Whites, Brodie and associates found
that more than half of Hispanics and Blacks said they were most likely
to get health information from television. Their study also showed that
both African Americans and Hispanics relied more on general audience
media for information than on ethnic media.
While general audience media are used more than ethnic media
by African Americans and Hispanics, media use varies by the level of
acculturation or assimilation (Brodie et al., 1999). More acculturated
Hispanics use general audience media to acquire health news, whereas
less acculturated Hispanics prefer ethnic media. For all U.S. ethnic and
racial groups, the use of ethnic media offers many benefits—for example,
it can help one maintain one’s ethnic cultural identity (Lacy, Stephens, &
Soffin, 1991; Subervi-Vélez, 1986). Economic research shows that peo-
ple belonging to ethnic groups consume ethnic media in metropolitan
areas where there are large ethnic populations (George & Waldfogel,
2003). Wilkin and Ball-Rokeach (2006) found in surveys of two Hispanic
immigrant neighborhoods in Los Angeles that respondents relied first
50 Health Communication in the New Media Landscape
on interpersonal communication for health information (46%), then
ethnic television (32%), and last on books or magazines (12%). A Pew
Hispanic Center survey (2004) showed that Spanish-dominant Hispan-
ics are more likely to get news from television, while English-dominant
Hispanics rely more on newspapers, radio, and the Internet. Likewise,
a Kaiser Family Foundation (1998) survey showed that 68% of Span-
ish-speaking Hispanics preferred getting health information from ethnic
media. There have been several studies of Black media consumers (Syl-
vester, 1993; Vercellotti & Brewer, 2006). One survey by Sylvester (1993)
of African American newspaper readers reported that 80% read stories
about health risks and 67% said that those stories influenced them to
change a health behavior.
There are other individual factors associated with cultural differ-
ences in media use. Oetzel, de Vargas and Ginossar (2007) examined
Hispanic women’s preferences for receiving cancer information and
found that a woman’s ethnic identity and her “self construal” (whether a
person is independent or interdependent on others) influenced whether
she relied on mass media for health information. They found that bicul-
tural and interdependent women preferred media channels to interper-
sonal channels.
Media Content
In that ethnic media are trusted sources of information for members of
racial/ethnic groups (Lacy et al., 1991; Sylvester, 1993), it is important to
know how well these media present information about health issues.
Studies of African American ethnic media suggest that magazines for
women do not do a particularly good job of promoting healthful behav-
iors. Hoffman-Goetz, Gerlach, Marino, and Mills (1997) found that
readers of Black women’s magazines in 1994 would have to flip through
55 pages to encounter a tobacco ad but read 748 pages to find an article
about cancer. Omonuwa and Bradford (2001) analyzed five Black-oriented
magazines and five White-oriented (general audience) magazines and
observed that Black magazines dedicated fewer pages to health stories,
addressed fewer health topics, and contained more alcohol ads. Duerk-
sen and associates (2005) studied health-related ads in general audience,
Black, and Hispanic magazines and found that the general audience
magazines had twice the number of advertisements, and that the health
ads were more positive. Black and Hispanic magazines had more nega-
tive health ads, which they defined as ads for “cigarettes, alcohol, and
Chapter 3 Communication Strategies 51
medical treatments with no apparent value” as well as ads for “candy,
ice cream, gelatin desserts,” and other foods with little nutritional value.
Positive ads promoted good health prevention behaviors, clinical trial
participation, nutritional food choices, among other healthful behaviors.
Taken together, these findings suggest that any positive messages in the
editorial content of ethnic consumer magazines may be overshadowed
by the messages conveyed in the advertising.
In contrast, content studies of Black newspapers have found that
they do better in some areas than general audience newspapers. For
instance, Cohen, Caburnay, Luke, Kreuter, Rodgers, and Cameron
(2006) analyzed health news content in Black and general audience
newspapers and found that there was more mobilizing information (e.g.,
telephone numbers, Web site addresses) in Black newspapers. Len-Ríos,
Park, Cameron, Luke, and Kreuter (2008) found that Black newspapers
reported on the issue of prostate cancer for men in greater proportion
than did general audience newspapers. Similarly, Stryker, Emmons, and
Viswanath (2007) reported that ethnic newspapers delivered cancer
information to readers that was more accessible and prevention-focused
than did mainstream newspapers.
Fewer recent studies of Hispanic media content have been con-
ducted. One such study by Vargas and de Pyssler (1999) analyzed 2,386
stories in daily and weekly Hispanic newspapers from six cities. They
found that nearly half of their sampled news stories were dedicated to
health, but that few stories addressed health policy and the economic and
political realities of the health system. For example, only 8% of health
stories addressed health care costs, insurance, and health care providers.
Vargas and de Pyssler point out that while information about illness is
important, it is equally important that media serving immigrant popula-
tions help consumers understand how to navigate the health system.
Web-Based Media
Many researchers believe that the Internet and World Wide Web hold
promise for reaching members of underserved racial and ethnic groups.
Research by Fox (2005) shows that English-speaking Hispanics have
closed the Internet access gap, but that African Americans and people
older than 65 are still at a disadvantage. A 2007 report showed that 56%
of Hispanics, 60% of Blacks, and 71% of White non-Hispanics reported
using the Internet (Fox & Livingston, 2007). An academic analysis of
Pew data comparing Internet use between 2000 and 2002 showed that
52 Health Communication in the New Media Landscape
there are access inequities between Whites and Blacks and that Whites
do more health information seeking than Hispanics (Lorence, Park, &
Fox, 2006). Pew Hispanic Center (2004) data also show that while half
of English-dominant Hispanics reported getting news from the Internet,
only 3% of Spanish-dominant Hispanics said they were likely to do so.
Fox and Livingston (2007) suggest that the disparities across all groups
are related to not having completed high school. While scholars (Viswa-
nath & Kreuter, 2007) recognize that the Internet and other advances in
communication technology can offer new ways to inform and educate
the public about health issues, they also caution that steps must be taken
to ensure that inequalities are not simply perpetuated in new ways and
that it is necessary to ensure access.
Although Web-based mass media may not currently be the best way
to convey public health messages to underserved populations, training
interventions by telemedicine specialists have shown that computer
skills training can have substantial positive effects. Masucci and associ-
ates (2006) showed that skills training for participants who had little or
no previous Internet access enabled 87% to submit data to a telehealth
system. Most participants in the study were more than 64 years old;
about half were African American and half were White.
THE FUTURE OF MASS MEDIA CAMPAIGNS
One of the projects of the National Cancer Institute’s Centers for Ex-
cellence in Cancer Communication Research is Ozioma, which means
“good news” or “gospel” in the Nigerian ethnic Igbo language (Chuk-
wuma, 1981). The research project’s innovative use of public relations
techniques provides Black newspapers with community-level data and
culturally relevant cancer news stories at a cost well below that needed
for an advertising campaign. The study, which combines expertise in
health interventions with mass communication science, is a collabora-
tion between researchers at the Saint Louis University School of Public
Health and the Missouri School of Journalism. Data are still being col-
lected for the study, but initial results indicate that the news service has
been successful in generating stories in Black newspapers that are cul-
turally relevant and provide resource information (Kreuter, 2006). Audi-
ence surveys of Black newspaper readers will determine if the stories
are increasing reader knowledge and awareness of cancer prevention
and detection behaviors. If this mass media intervention is successful,
Chapter 3 Communication Strategies 53
it could be a meaningful way to reach African American audiences and
opinion leaders through a trusted news channel.
CONCLUSIONS
From the studies examined here, application of campaign strategies
using the mass media to reach underserved groups appears to achieve
some measure of success when controlled media, such as advertising
and print media, are used to ensure sufficient levels of message satura-
tion (Beaudoin, 2007; McLaughlin et al., 2004); language preferences
and cultural symbols are taken into account (Mock et al., 2007); and the
media channels selected are the ones used most and preferred by the
audience members (Wilkin & Ball-Rokeach, 2006).
There are also some cautions. For instance, campaigns may only be
effective if positive messages, those that advocate healthful behaviors,
outnumber or overpower negative ones. Also, there is heterogeneity
among ethnic groups (Valdés, 2000), so ethnicity alone may not be the
best segmentation technique (Hornik & Ramirez, 2006).
There are critics of a media effects approach to reaching under-
served groups. Recent reviews suggest that researchers have focused
too much on message characteristics and individual levels of analysis at
the expense of exploring social and structural community characteristics
(Viswanath & Emmons, 2006). Still others (Kar et al., 2001) argue that
communicators often forget to value and reinforce the positive health
behaviors that immigrants bring with them (e.g., eating fewer processed
foods and sweets). There have been calls from researchers to involve
communities in the design of mass media health campaigns (e.g., mes-
saging, outreach) rather than viewing them as target audiences.
The research reviewed here certainly addresses racial and ethnic
groups from the perspective that information can help alleviate health
disparities. It is true that a person who is unaware of a health problem
or how to prevent a health problem will likely not address the health
problem. The mass media are effective at the information awareness
stage, but we know less about how repeated exposure to messages over
time can influence health behavior or how information from the media
is spread through social networks throughout a community.
While the research topics addressed in the studies here are pretty
straightforward—get a Pap smear, a mammogram, exercise, eat right,
check your home for lead—other types of health information may need
54 Health Communication in the New Media Landscape
more specialized understanding. For example, how do people understand
their medical benefits, prescription medications, or the public policies that
govern the health care system? As some research suggests, this informa-
tion is not necessarily accessible to those who need it (Vargas & de Pyssler,
1999). Health literacy, or the ability to understand and use health informa-
tion, is an important component of reducing health care inequities because
research shows that those who already suffer health disparities tend to
be more likely to have lower levels of health literacy (Davis, Williams,
Marin, Parker, & Glass, 2002). As health communication professionals and
researchers continue to develop campaigns to improve public health for
the underserved, part of the campaign should focus on improving people’s
understanding of basic health concepts, since nearly half of Americans
have medium to low levels of health literacy (Davis et al., 2002).
NOTES
1. Health disparities are not always defi ned as linked solely to race or ethnicity. It is acknowl-
edged that disparities are infl uenced by structural factors (e.g., quality of treatment avail-
able in communities, environment, educational institutions) and individual-level factors
(e.g., mistrust of the medical system, employment, prejudices, communication barriers).
Research from various sources shows that health disparities exist for populations that are
not privileged: certain racial/ethnic groups; gay, lesbian, bisexual, and transgender group
members; people with disabilities, the elderly, and those with a low socioeconomic status.
Racial and ethnic minorities can fall within the other groups listed.
2. Mass media is defi ned by Webster’s II New Riverside University Dictionary as “a
means of public communication reaching a large audience” (p. 731). According to
a defi nition elaborated by Severin and Tankard (2001) mass communication reaches
“relatively large, heterogeneous, and anonymous audiences,” sends messages “timed
to reach most audience members simultaneously,” and is undertaken by “a complex
organization that may involve great expense” (p. 4).
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59
4
Health communication scholars have increasingly called for the develop-
ment and synthesis of theoretical insights in understanding, interpret-
ing, explaining, predicting, analyzing, and critiquing communication pro-
cesses, strategies, tactics, and messages in health care settings (Thompson,
Dorsey, Miller, & Parrott, 2005). The theoretical emphasis in health com-
munication demonstrates the relevance of theory in the development of
meaningful and effective applications and is an exemplar of the ways in
which theory and practice can inform each other in the context of commu-
nication problems. As Thompson (2005) points out, the field has been in-
creasingly sensitized to the importance of theoretically driven insights that
can equip scholarly understanding of communication processes in health
care and thus inform the development of health care solutions both in the
United States and around the global. Theorizing in health communication
has by its very nature been driven by practice and, in turn, has contributed
to the ways in which the delivery of health care has been practiced.
The goal of this chapter is to review the state of the field in health
communication; examine the micro (small), meso (medium), and macro
(large) levels of health communication; examine key trends in health
care and their impact on health communication; and finally summarize
the grand challenges facing health communication, including those of
health care access, culture, health care quality, and technology.
Health Communication: Trends
and Future Directions
MOHAN J . DUTTA
60 Health Communication in the New Media Landscape
CONTEXTS OF HEALTH COMMUNICATION
As a discipline, health communication may be defined as the study of
communication principles, processes, and messages directed toward the
development of micro-, meso-, and macro-scale health solutions (Du pre,
2005; Dutta, 2007a). Whereas the process-based perspective suggests that
communication is an ongoing human effort to create and share ways of
interpreting the world around us (Du pre, 2005), the message-based per-
spective emphasizes the ways in which effective communication materials
may be created to have desired effects on the audience (Murray-Johnson
& Witte, 2005). The different scales of the solutions in health care are dic-
tated by the nature of the problem being studied and the level of emphasis
that guides the identification of the problem (Dutta-Bergman, 2004a).
Furthermore, the levels at which health communication solutions
are articulated are embedded within the contexts in which we construct
the health care problem to be studied. For instance, the study of phy-
sician–patient communication typically focuses on the locally situated
context of the physician’s office or examination room, where the interac-
tion between the physician and patient takes place (Dutta, 2007b). In
contrast, the study of radio-based health promotion messages focuses on
the context of the communities (local, state, and/or national) in which
the radio programming is broadcasted (Dutta, 2007b).
The scale and context of the health care problem are central to the
ways in which health communicators go about developing and utilizing
theories to address the problem. This emphasis on the broader context
of health care is increasingly evident in health communication research
that underscores the importance of an ecological perspective that locates
health communication within the broader environment in which health
care structures, institutions, and processes are situated (Airhihenbuwa,
1995; Airhihenbuwa & Obregon, 2000; Dutta, 2007a, 2007b; Dutta-
Bergman, 2003, 2004a, 2004f, 2004h; Street, 2005). In other words,
health communication theorists as well as practitioners are becoming
increasingly sensitized to the complexities and interrelated webs of com-
municative processes within which health care is situated and health
meanings are continuously negotiated.
Figure 4.1 depicts the different levels and contexts for health commu-
nication research from an ecological perspective. Health communication
here may be conceptualized in the realm of health organizations and the
principles of organizing of health care systems, communities, and cultures.
Health care is typically delivered by health organizations such as clinics and
Chapter 4 Health Communication: Trends and Future Directions 61
hospitals that communicate with a variety of stakeholders such as patients,
relatives, media, communities, and policy makers in order to provide health
solutions. Depending upon the lens that is applied to investigate a health
problem, the study of health communication in the context of the
health organizations can be categorized as micro, meso, or macro level.
The micro-level emphasis in health communication typically focuses
on the interpersonal relationships that play out in the context of health
organizations, families, friendship networks, and various forms of orga-
nizing. Studies of physician–patient interactions and social support in
health communication typically fall within this domain. Scholars studying
physician–patient interactions typically focus on describing and explain-
ing the nature of physician–patient relationships and the characteristics
of competent health communication skills and then create skills training
programs that are directed at providers and patients. The micro-level per-
spective in health communication is also evident in the diffusion of health
interventions through the use of peer networks and opinion leaders to
communicate health information. In such instances, one-on-one interac-
tions among individuals diffuse the information in the community and
create opportunities for diffusing the information into the broader com-
munity, thus demonstrating the possibilities of linking the micro- with the
macro-level elements of health communication (Dutta, 2007b).
The meso-level emphasis in health communication examines the
nature of communication processes, infrastructures, and messages in
Figure 4.1 The Nature and Scope of Health Care Communication
62 Health Communication in the New Media Landscape
health organizations and in the relationships between health organiza-
tions and their multiple publics (Lammers, Barbour, & Duggan, 2005).
Whereas traditional health organizations include those organizations
that are directly involved in the delivery of health care, such as physi-
cians’ offices, medical groups, hospitals, nursing homes, hospices, and
departments of public health, it is important to widen the scope of
our definition to include workplaces, because a significant proportion
of health care is delivered through workplaces. Organizational stud-
ies in health communication investigate the nature of communica-
tion in health care teams, occupational identification, management of
organizational change, the role of leadership in health organizations,
the nature of health care in organizations, the points of delivery of
health care, and the like. The relationship between health organiza-
tions and their publics falls within the purview of strategic commu-
nications, and health communicators working on organization–public
relationships focus on the various strategies that might be utilized
by organizations to build effective and meaningful relationships with
various stakeholder groups. Strategic communicators investigate the
various messaging techniques that might be deployed to accomplish
persuasive tasks, to achieve organizational objectives, to prevent crises,
and to respond to crises.
The macro-level perspective in health communication studies the
community- and societal-level aspects of health care processes and sys-
tems (Airhihenbuwa, 1995; Dutta, 2007a, 2007b; Dutta-Bergman, 2003,
2004a). Health communicators, for instance, often engage in community-
based interventions that utilize communities as channels to diffuse health
information, health beliefs, health attitudes, and health behaviors. The
community serves as a point of entry for reaching out to the target audi-
ence of health promotion campaigns (Murray-Johnson & Witte, 2005).
A significant proportion of community-based health communication
programs harness the high reach of mass media to reach out to large
audiences. The macro perspective is further evident in studies of health
communication that investigate social patterns in the distributions of
disease and health and suggest strategies for developing societal-level
interventions to address health problems. Health communicators study-
ing health care policies also adopt a macro-level perspective to under-
stand the ways in which health policies are discursively constructed and
the ways in which such policies limit possibilities for health and suggest
transformative communication strategies that open up opportunities for
changing unhealthy structures in social systems (Dutta, 2007b).
Chapter 4 Health Communication: Trends and Future Directions 63
Although the micro-, meso-, and macro-level perspectives pro-
vide different entry points for understanding, describing, interpreting,
explaining, and ultimately transforming health care systems, much of
current health communication work exists at the intersections of these
levels. For instance, workplace health promotion programs utilize one-
on-one peer networks and mass-mediated channels to diffuse health
behaviors in the organization. What we see here is the interpenetration
of the micro (one-on-one), meso (organizational), and macro (mass-
mediated) dimensions of health communication.
In the next section, I will review some of the key areas of health
communication research in recent years. In identifying these key areas, I
have particularly paid attention to the major thrusts of scholarly research
evident in the two mainstream health communication journals: Health
Communication and Journal of Health Communication. I have also sup-
plemented my observations with the key areas identified in the Hand-
book of Health Communication. The areas reviewed briefly in the next
section include physician–patient communication, community-based
health communication, media-based health communication, and health
policy. This discussion will provide the backdrop for looking at the trends
in health care, and connecting these trends in health care to the trends
in health communication research.
AREAS OF HEALTH COMMUNICATION
The areas of health communication included in this section range from
the micro to the meso to the macro levels. At each of these levels, I will
draw attention to the theoretical impetus, followed by a discussion of
the methodological and pragmatic elements of health communication
research. Furthermore, as I discuss the research in these key areas
of health communication, I will attempt to build linkages among the
areas and demonstrate the possible domains of overlap where health
communication research brings together various levels of health com-
munication processes and messages, suggesting the complexities of
intertwined relationships that define health communication processes.
Ultimately, my goal would be to suggest the importance of a polymor-
phic approach to the scholarship of health communication that gener-
ates and builds on dialogue across the various levels and paradigms of
health communication research (Dutta, 2007a, 2007b; Dutta- Bergman,
2004f, 2004h).
64 Health Communication in the New Media Landscape
Physician–Patient Communication
The area of physician–patient communication was one of the first areas
in which communication scholars contributed to the study of health care
processes. Much of the immediate experience of health care happens in
the context of providers of health. Under the dominant model of health
care that circulates in the United States, much of this immediate health
care delivery happens in the office of the physician. Therefore, studies of
the domain of physician–patient interaction explore the communication
strategies and messages used by physicians and patients during medical
encounters.
This research on provider–patient communication suggests that
provider–patient communication styles influence a variety of patient
behaviors and outcomes, including patient satisfaction with care (Street,
2005). Beyond patient satisfaction, studies of provider–patient interac-
tions point out that the nature of these interactions influences physiolog-
ical outcomes, adherence to treatment, and the likelihood of malpractice
complaints (Duggan, 2006). Satisfaction measures have typically tapped
into overall satisfaction and aspects related to the provider such as
humanity and competence, as well as aspects related to the system such
as costs and physical infrastructures (Street, 2005).
Researchers studying communication styles of physicians have looked
at the ways in which patient-centered and doctor-centered styles influence
outcomes (Street, 2005). The patient-centered style is characterized by
communicative strategies that invite the patient’s perspective in the consul-
tation such as open-ended questions, requests for opinions and concerns,
and offers of support and counseling. In contrast, the doctor-centered style
primarily emphasizes clinician control; doctors practicing in this style tend
to ask closed-ended questions, interrupt the patient, give directions. After
controlling for the demographic characteristics and degree of participation
of patients, Street (2005) observed that individual physicians demon-
strated variances in communication styles in the extent to which they
provided information, used partnership-building strategies, and utilized
positive socioemotional strategies such as reassuring and encouraging the
patient. In addition to observing variances in individual physician com-
munication styles, health communication researchers have also observed
that physicians vary in the ways in which they communicate to different
patients, and thus the ways in which they adjust their styles. Such variances
in physician communication styles have been observed in the extent and
nature of the patient’s health care status, age, gender, and ethnicity.
Chapter 4 Health Communication: Trends and Future Directions 65
In addition to investigating the role of provider communication
styles, scholars have also investigated the influence of patient commu-
nication styles on a variety of outcomes. Patients vary in their commu-
nication styles; they range from being expressive and communicative
to being submissive and passive during the physician–patient interac-
tion. Scholars studying patient communication styles suggest variance
in patient styles in terms of age, gender, education, income, race, and
other characteristics. For instance, patients with more formal education
are more likely to be expressive than their less educated counterparts
(Street, 2005). Studies report that patients who have a large repertoire
of linguistic and informational resources for communication are more
likely to actively participate in the medical encounter (Street, 2005).
Patients with internal locus of control, high levels of self-efficacy, and
high skill levels are also more likely to provide more information, ask
more questions, and speak longer in general in their consultation with
physicians (Duggan, 2006).
The research on communication styles and communication skills
has provided impetus for the development of training programs that
are directed at training physicians and patients in communication skills.
Programs that emphasize training providers teach a variety of skills such
as data gathering, interviewing, rapport building, facilitation, checking
and clarifying comments, asking open-ended questions, establishing eye
contact, seeking patients’ views, making empathic statements, eliciting
patients’ concerns, listening, engaging in psychosocial discussion, and
probing for patients’ understanding (Cegala & Broz, 2005). Such train-
ing programs utilize a variety of strategies, such as modeling through
the use of instructional videos, role playing with feedback, lectures, live
demonstrations, and discussions. Interventions directed at patients have
mostly focused on patient information exchange skills—primarily infor-
mation seeking, information provision, and information verifying (Cegala
& Broz, 2005). Strategies for patient training have included modeling of
question asking, videotaped training, booklets, handouts, leaflets, and
practice sessions (Cegala & Broz, 2005).
Communication skills and the ways in which we conceptualize effec-
tive communication skills vary according to local, cultural, economic,
and social contexts. The provider–patient relationship and the com-
munication skills and strategies deployed in the relationship have also
evolved with the changing trends in health care today. The increasing
emphasis on patient participation (to be discussed later in this chapter),
coupled with increasing attention to the sociocultural environment that
66 Health Communication in the New Media Landscape
constitutes provider–patient relationships, has provided the foundation
for Street’s (2005) ecological model of provider–patient interactions,
which draws attention to the social contexts within which health care
relationships are situated. He suggests that in addition to looking at the
interpersonal context of provider–patient consultation that is embedded
in the immediate setting of the medical encounter, we also pay attention
to the mediated context (e.g., Internet, telemedicine, mass media), cul-
tural context (e.g., issues of race/ethnicity, culture, socioeconomic status,
religion), political legal context (e.g., patient bill of rights, malpractice
litigation, Medicaid/Medicare coverage), and the organizational context
(e.g., managed care, services offered, standards of care) of health care
interactions.
The ecological model points out that the interpersonal communi-
cation between physicians and patients is embedded within a broader
environment and this environment plays a crucial role in the ways in
which physicians and patients communicate with each other, the com-
munication styles and strategies that are used, and the outcomes associ-
ated with these styles and strategies. This model particularly highlights
the changes in technology that have occurred, the role of culture, and
the level and type of access available to patients (Dutta, 2007b). We will
look at some of the current trends in health communication research
on provider–patient interactions when discussing the response of health
communicators to the changing landscape of health care in the last sec-
tion of this chapter.
Community-Based Health Communication
Health communicators have increasingly focused on the community con-
text of health care as they have attempted to address the locally situated
nature of health issues (Dorsey, 2005). A community is defined as an “infor-
mally organized set of loose associations among residents”(Dearing, 2003,
p. 209). There has been an emerging acknowledgement that community
participatory processes can provide important avenues for disseminating
health interventions, particularly in the context of underserved communi-
ties in the United States and across the globe. Furthermore, there is an
increasing awareness that local communities ought to be at the heart of
health promotion efforts (Scherer & Juanillo, 2003). Community-based
health communication projects have taken a wide variety of forms, ranging
from top-down campaigns that utilize community platforms as channels to
diffuse health information to health communication programs that utilize
Chapter 4 Health Communication: Trends and Future Directions 67
grassroots mobilization strategies and community coalitions to seek out
resources for the community and to bring about structural changes (Dear-
ing, 2003; Dutta-Bergman, 2004a, 2004c, 2004g).
At the heart of community-based health communication is the idea
that communities can serve as channels of communication about health
issues. The formal and informal networks that are present within a com-
munity offer avenues for creating and sustaining healthful beliefs, atti-
tudes, and behaviors within communities (Beaudoin, Thorson, & Hong,
2006). The importance and usefulness of community participation have
been underlined by a variety of health campaigns for causes like heart
disease prevention, smoking prevention and cessation, HIV prevention,
healthy eating, and road safety (Kawachi, Kennedy, & Glass, 1999). Ste-
phens, Rimal, and Flora (2004) point out that since participation and
membership in community organizations are voluntary, health messages
that come out of community organizations are likely to be considered
with greater trust. Scholars like Rappaport (1987) and Repucci, Woolard,
and Fried (1999) note that individual-level preventive efforts should be
complemented by community-based approaches.
According to Merzel and D’Afflitti (2003), the rationale for the
community-based approach to health promotion stems from the notion
that individuals cannot be considered separate from their social milieu,
and that context is interdependent with the health and lives of individ-
uals in the community, and hence the community as a whole. Camp-
bell and Jovchelovitch (2000) state that participation allows community
members to formulate strategies that are based on the barriers they face
and their perceived health needs. As a result, health program messages
and program implementation procedures are created within the com-
munity; this enhances their chances of eliciting desired results. Related
to this is the notion of empowering the community. Communities with
actively participating members are likely to perceive that they are more
in charge of their lives. Hence they are also more likely to take control of
their health, engage in health-enhancing behaviors, and actively seek out
health resources (Campbell & Jovchelovitch, 2000). A conglomeration
of individuals with such high loci of control will result in a community
that ranks high in terms of being healthy and engaging in health promo-
tion practices. In other words, situating a health communication model
within a participatory community–based framework empowers mem-
bers of the community to articulate their needs, map available resources,
mobilize in the production of positive health outcomes, and engage in
health sustenance behaviors (Dutta-Bergman, 2003).
68 Health Communication in the New Media Landscape
This community-based health communication work has been com-
plemented by health communication projects that underscore the role
of communities in fostering healthful contexts. This line of work is cap-
tured under the broader umbrella of social capital and health. Social
capital refers to the formal and informal ties in a community that bring a
community together and create community cohesiveness (Dutta-Bergman,
2004e, 2004g). It is also reflective of the resources available in the social
structure that can be accessed and mobilized for strategic actions (Dutta,
2007b). Health communication research examining the role of social
capital in health points out that community participation is positively
associated with a variety of positive health behaviors (Dutta-Bergman,
2004e, 2004g). In other words, those individuals who are more likely to
participate in their communities are also more likely to engage in a vari-
ety of health-related behaviors.
Social capital generates positive health outcomes by creating a sup-
portive environment, by mitigating the stress and loneliness experienced
by individual community members, and by fostering high levels of self-
efficacy (Kawachi et al., 1999). People with higher levels of social capital
and trust also report lower mortality rates and better health status than
other people (Kawachi & Berkman, 2000).
Communicating in community contexts nurtures, sustains, and
fortifies health behaviors. Community social networks serve as points
through which health information can be accessed and disseminated,
resources for health information, resources for community mobilizing
and organizing around key health issues, resources for mobilizing to
secure additional structural resources, and points of access for bringing
about changes in unhealthy local, national, and global structures. The
literature reports that not only are communities with high social capital
more likely to serve as conduits for health promotion efforts, but they
are also likely to provide the needed resources for community mobiliza-
tion around structural issues (Dutta, 2007b). In other words, commu-
nities with high social capital have community capacity for mobilizing
network resources to address questions of policy and to go about seeking
to change unhealthy policies.
This community capacity-building aspect of health communication
provides impetus for the next generation of research that explores the
role of community participation in promoting infrastructural change,
examines the participatory mechanisms for engaging with community
members, and suggests ways of building community capacity for devel-
oping community-based solutions. In addition, the role of technology in
Chapter 4 Health Communication: Trends and Future Directions 69
community-based health organizing is yet another area that has started
receiving increasing attention in communication research.
Media and Health Communication
The role of the media in health as an influencer and shaper of health
beliefs, health attitudes, and health behaviors is well documented in
the health communication literature (Parrott, 2004). In fact, one of the
earliest strands of health communication research explored the ways in
which mass media could be utilized for disseminating health information
to the public, informing health beliefs, shaping health attitudes, and ul-
timately influencing health behaviors (Salmon & Atkin, 2003). As articu-
lated by Rogers and Storey (1987) in their seminal piece on campaigns,
campaigns are purposive in their desire to generate certain outcomes in
a relatively large number of individuals within a specified time period
through the use of an organized set of communication activities. This
area of health communication campaigns has historically focused on the
mass media as the mass media have provided large-scale reach to the in-
tended audiences of campaign messages (see Salmon & Atkin, 2003, for
a review). Theories of mass media and persuasion have provided valu-
able guidelines regarding the strategic choice of media vehicles, sources
to be used in campaign messages, the content of campaign messages,
the appeals to be presented through campaigns messages, and the like
(Salmon & Atkin, 2003; Slater, 1999; Snyder, 2001).
Particularly in the domain of campaigns, health communication schol-
ars have examined the role of the information- and entertainment-based
media in promoting both healthy and unhealthy behaviors. What are the
types of health beliefs, health attitudes, and health behaviors promoted
through programming such as news programming? Traditionally the pro-
motion of health through the mass media has been conceptualized in
terms of the diffusion of health information. The diffusion-of-innovations
framework widely circulated in the health communication literature has
been built on the assumption that the mass media can serve as conduits
for diffusing health interventions by informing the public about health
issues. Outlets such as radio and television news have been widely used to
diffuse health information to at-risk communities. Specific news segments
have been developed that are directed at serving the health information
needs of particular target audiences. Radio programming was particu-
larly crucial in early campaign research and practice, as radio provided
a large reach for campaigns, particularly among otherwise- hard-to-reach
70 Health Communication in the New Media Landscape
segments of the population. Analysis of media usage patterns suggests that
the information-based approach to mediated campaigns often contributes
to the gaps between the haves and have-nots by serving as a resource for
members of the health-oriented segments, who are more likely to follow
news-based programming than are members of the low health–oriented
segments, who are more likely to consume entertainment programming
(Dutta-Bergman, 2004c, 2004d, 2004g, 2005b).
Starting with this early emphasis on communication as informa-
tion, health communication scholars moved on to articulate the role of
entertainment programming as a source of health information for target
audiences (Dutta-Bergman, 2004d). The term “entertainment- education”
describes the embedding of information in entertainment contexts. Since
the early entertainment-education programs that were carried out in the
realm of development communication programs, health communication
scholars have investigated the ways in which health messages might be
strategically placed in entertainment programs and the content strate-
gies that might be deployed in such programs. Dutta-Bergman (2004c,
2005b) argues that entertainment-education programs serve as channels
for reaching out to the less health–oriented segments of the population,
as such segments of the population often acquire health information ser-
endipitously through exposure to health content within the context of
entertainment programming.
The notion that entertainment programs provide role models, infor-
mation resources, and decision-making cues for the performance of a
variety of health-related behaviors led health communication scholars to
examine the role of entertainment programming in the realm of a variety
of health behaviors. Scholars have conducted content analyses to exam-
ine the nature of health-related content in entertainment programming.
Assessments of such portrayals have provided the impetus for health
advocacy that is directed at improving or shifting the type of coverage
of a specific health issue in the media (Morgan, Harrison, Chewning,
Davis, & Dicorcia, 2007).
Finally, media-based health communication scholars have increas-
ingly started adopting a strategic approach to the utilization of the mass
media for health-related purposes. One of the core components driving
the strategic approach is the awareness that health care consumers use
the mass media to gratify a wide range of felt needs. Uses and means
of gratification and selective exposure theories draw our attention to
the various ways in which media audiences utilize the mass media for a
wide variety of purposes. From a selective exposure standpoint, health
Chapter 4 Health Communication: Trends and Future Directions 71
communication scholars have empirically demonstrated that within-
population differences in involvement in health-related issues signifi-
cantly influence the processing of health content in the media.
For instance, individuals who are already highly motivated regarding
their health are the ones who are likely to seek out health-related news
from a variety of channels (print, television, radio, Internet etc.) and pro-
cess health information received from mediated channels (Dutta-Bergman,
2004a, 2004b, 2004d, 2004e, 2004f, 2004h). As a consequence, medi-
ated messages are less likely to reach those segments of the population
that are less likely to be interested in issues of health. This leads to the
increasing gaps between the health haves and have-nots as mediated
messages continue to serve as resources for health information for the
health-oriented segments of the population.
Applications of uses and gratifications theory in health contexts also
emphasize the motivation-based perspective and suggest that there exists
within-population variance in people’s motivations for using health-based
media content. Understanding these within-population differences allows
health communicators to formulate strategies for reaching out to different
segments of the population, specifically the underserved segments of the
population that are less likely to have access to health care resources. Sim-
ilar patterns are observed in the research that examines the relationship
between access to new media technologies and health care disparities,
suggesting that underserved segments of the population are also less likely
to have access to new media technologies such as the Internet that serve
as health information resources (Dutta-Bergman, 2004c, 2005b, 2005e).
Furthermore, there are within-population differences in people’s
motivation to use such technologies and the knowledge of ways to use new
media technologies for health-related purposes. Summarizing these dif-
ferences in patterns in access to, motivation and knowledge to use, and
efficacy of health-related media uses, health communication scholars
suggest the importance of a strategic approach to health communica-
tion that utilizes formative research on media usage patterns to develop
campaign strategies. Recent years have witnessed a dramatic increase
in health communication studies and applications that apply new media
technologies for disseminating health information.
Policy and Health Communication
Health communicators are increasingly underscoring the roles of
health care policies in shaping the landscape of health, based upon the
72 Health Communication in the New Media Landscape
realization that health communicators have been rather slow in examin-
ing the role of communication in shaping health care policies and prac-
tices (Kreps, Bonaguro, & Query, 1998; Wallack & Dorfman, 2001). They
have drawn attention to the notion that it is ultimately in the realm of
policies that decisions are made about health care and the ways in which
health care is distributed in the population. Policies also determine the
ways in which health initiatives consider the role of communication and
the emphasis on communicative strategies in the realm of public health
problems (Kreps, 2003). Such policies cover a wide gamut ranging from
the local levels to the state levels to the national and international levels.
Ultimately, policies determine the ambit of health communication prac-
tice, defining the scope of the problems we work with and the solutions
we develop in order to address these problems (Dutta, 2007a, 2007b).
Health care policies, in other words, dictate the terrain on which com-
municative practices are defined, enacted, and evaluated (Wallack &
Dorfman, 2001; Zoller, 2005).
Health communicators working at the level of policy explore
the ways in which policies construct discourses of health care, draw-
ing attention to the health-promoting and health-damaging aspects of
such policies (Dutta, 2007a, 2007b; Wallack & Dorfman, 2001; Zoller,
2005). The emphasis here is on understanding the ways in which such
policies promote or threaten health, and the communicative processes
through which these policies are articulated, discussed, implemented,
and evaluated.
Similarly, health communication provides an entry point for exam-
ining the relationship between the rhetoric of health care policies and
the practices of these health care policies. It is worthwhile to examine
the match or mismatch between the rhetoric and practice of health
care policies because it is by examining these gaps that problems may
be identified in the health care system. The gaps in health care policy
discourses and the practice of such policies provide tools for evaluating
the real impact of the policies that are circulated and supported in main-
stream health care. Furthermore, a discursive approach to health care
policies provides invaluable entry points for interrogating the communi-
cative processes through which health care discourses marginalize and
silence certain sectors of society. By raising questions such as “Who gets
to speak in the discursive space?” “Who has voice and who does not?”
and “How are agendas and issues discursively constituted by dominant
social actors?” health communication scholars can draw our attention to
the processes through which certain policy articulations are normalized.
Chapter 4 Health Communication: Trends and Future Directions 73
For instance, critical health communication scholars examining the dis-
cursive spaces constituted by campaign policies question the individual-
level focus of health campaigns and suggest the need for policy discourse
to examine the unhealthy structures of health that are supported, reified,
and recirculated by mainstream agendas in health care. The emphasis on
the individual as the subject of health care interventions draws attention
away from the need to address the structural inequities and resource
deprivation faced in certain communities.
The examination of the rhetoric of health care policies and the posi-
tioning of these policies in the backdrop of health outcomes provides the
basis for examining communication strategies for changing those health
care policies that limit access to basic health care, support health care
disparities, and sustain unhealthy social structures. The emphasis is on
developing communication processes and messages that are directed
toward shifting public opinion around key policies and influencing policy
makers. The emphasis is on advocacy and activism directed at bringing
about large-scale changes, instead of individual health behaviors. The
communication interventions developed in this realm ultimately seek to
create healthy communities by bringing about changes in the structures
constituting these communities. Theories such as agenda setting, prim-
ing, and framing provide important entry points for looking at ways of
shifting health care policies.
Now that we have reviewed the major strands of health commu-
nication research in the areas of physician–patient communication,
community-based health communication, health communication and
media, and health communication in the realm of policy, we will con-
sider these discussions within the context of key trends in health care
today. This discussion will serve as the basis for our exploration of new
directions in the next generation of health communication research.
KEY TRENDS IN HEALTH CARE
What are the key trends in health care, and what are the effects of these
trends on the ways in which we conceptualize health communication,
design health communication research, and develop health communica-
tion solutions? In this section, we will look at these trends and review the
ways in which health communicators might go about addressing these
trends in their work. In other words, an awareness of the trends presented
in this section is based on the premise that they might provide ways
74 Health Communication in the New Media Landscape
for thinking about communication solutions and the processes through
which these solutions might be deployed to address the grand challenges
in the health care industry. The knowledge of the trends provides ways
of conceptualizing and developing communication solutions in health
care. Ultimately, knowledge of the trends allows health communicators
to take stock of the existing research in health communication and find
new avenues that might provide the impetus for the next generation of
health communication research.
Increasing Consumer Participation
One trend is increasing consumer participation in health care processes
(see Chapter 6). The increasing participation of the public in health care
processes has opened up avenues for questioning the expertise-driven
model of health care that has traditionally dominated the health care
industry (Sharf, 2005). This shift from an expert-driven model to a more
participatory model has been brought about by changes in technology as
well as broader changes in the delivery of health care. The reconfigura-
tion in health care delivery processes has also brought about opportuni-
ties for addressing the ways in which consumer participation might open
up opportunities for addressing health care issues in democratic ways.
The emphasis on a consumer-driven model, however, has also intro-
duced questions on topics such as the construction of health care as a
commodity in a capitalist economy, the role of the state and nongov-
ernmental organizations in delivering health care, and the relationship
between health care access and the ability to participate in the consumer
economy. Whereas certain segments of the population have increasing
access to health care services, preventive resources, and communica-
tive platforms promoting health, other segments of the population are
increasingly marginalized through their lack of access to health services,
preventive resources, health information, and those communication
channels that serve as resources for health (Dutta-Bergman, 2004b,
2004c, 2004d, 2004e, 2004f, 2004g, 2005b, 2005e, 2005f).
For instance, the research on health orientation demonstrates that
the health-motivated segments of the population are also more likely to
participate actively in physician–patient relationships, seek out health
information from a variety of communication channels, process
health information actively, and participate in communication-based
health-enhancing platforms than are the segments of the population
that are not health oriented. This situation regarding participation in
Chapter 4 Health Communication: Trends and Future Directions 75
health-based communication channels, coupled with people’s lack of
access to participatory platforms, introduces questions regarding ways
to introduce communicative resources to underserved segments of the
population in developing communicative capacities for utilizing these
resources, as well as in addressing the broader structures that create and
sustain the conditions that foster people’s lack of access.
Increasing Diversity
The United States has become increasingly diverse over the last few de-
cades, and there has also been increasing acknowledgement that culture
plays an important role in health care interactions, health care deliv-
ery, reception of health information, and the like (Huff & Kline, 1999).
Health organizations have become increasingly sensitized to the need
for the development and delivery of culturally sensitive messages that
take the nature of a population’s culture into account in conceptualizing
health communication interventions. What are the ways in which culture
influences the communication needs of communities in health care set-
tings? How can health care organizations be responsive to the communi-
cative needs that are presented in differing cultural contexts? What are
the ways in which culturally responsive messages can be developed in
health communication campaigns that are sensitive to the various needs
of local cultural communities and therefore more likely to be influential
in multicultural contexts?
Furthermore, looking at health communication within the context
of globalization processes has also brought about fundamental questions
about the nature and characteristics of health and illness (Dutta, 2007a,
2007b). The flow of health communication across the globe called into
question the universal languages of health care and brought us face-to-
face with the multiple and often contradictory frames in which health
and illness might be defined and understood.
While globalization is an increasingly important factor in health
communication, researchers must still be sensitive to the local contexts
within which health meanings are narrated, interpreted, and commu-
nicated. What is the role of the local context in the various meanings of
health that circulate in local communities? What processes and strate-
gies might health communicators develop in order to centralize the role
of the context in health care interactions and experiences?
For health communicators, new challenges have evolved in terms
of defining the very nature of health, articulating health problems, and
76 Health Communication in the New Media Landscape
configuring health solutions through participatory strategies that engage
local communities. What are the ways in which health communication
theorists, researchers, and practitioners can contribute to the creation of
spaces for dialogue and conversation that invite the participation of local
community members? The emphasis on dialogue and conversation has
provided impetus for participatory health communication research that
explores the ways in which participatory spaces might be created and
sustained in local communities and in the interactions of the local com-
munities with key stakeholder groups.
Increasing Use of Technology
As discussed throughout this chapter, technology has emerged as a key
player in the delivery of health care information and services (Murero &
Rice, 2006). An increasing percentage of Internet users use the Internet
to receive, process, and share health information in their decision-making
processes. Health information technologies have facilitated the flow of
health information, preventive resources, and health care services. The
increasingly visible role of health information technologies in health care
decision-making processes has also fundamentally shifted the landscape
of health care services delivery in the United States and in other parts of
the globe. With the widespread access to health information facilitated
by new media technologies, health care providers have become increas-
ingly concerned about the quality of health information received by pa-
tients and the role of such health information in patient decision- making
processes. Furthermore, the differential patterns of distributions of
technologies in communities and societies have triggered interest in the
linkages between the digital divide and health care disparities.
Increasing Health Care Disparities
Finally, and perhaps most importantly, a survey of the landscape of
health services, U.S. age patterns, and health care access demonstrates
increasing national and global disparities in people’s access to and
usage of health care services. Whereas the health-rich continue to have
better access to health care choices, the underserved segments of the
popu lation continue to lack access to basic health care. Disparities in
health care in the United States are affected by characteristics such as
race, socioeconomic status, gender, and geo graphic location (Dutta,
2007a; 2007b). What are the communicative avenues for addressing
Chapter 4 Health Communication: Trends and Future Directions 77
these disparities? In examining the role of communication, health
communication scholars observe that individuals, groups, and com-
munities that have poor access to a wide range of health care services
also have poor access to communicative infrastructures (Dutta, 2007b;
Dutta, Bodie, & Basu, 2007). In other words, structural disparities in
communication infrastructures mirror structural disparities in health
care infrastructures and reflect deep-seated disparities within social
systems (Dutta, 2007b). (See Chapter 3 for more on disparities in
health care.)
Socioeconomic Disparities
Low socioeconomic status (SES) is one of the critical indicators of struc-
tural violence and plays out its role in the realm of health care by limiting
people’s access to a variety of health care resources that are considered
necessary for human survival. Individuals living in poor communities are
directly exposed to violence through the absence of basic infrastructures
and opportunities, and through the presence of a variety of threats to
their health. Social class is a critical indicator of health capacity in un-
derserved communities, with poorer communities having lower health
capacity than communities that have higher levels of income.
The basic health infrastructure in such communities is either absent
or minimal, with a limited number of providers, limited medical supplies,
limited health care technologies, limited transportation, and limited
access to preventive resources. In addition to affecting the distribution
of resources at a community level, SES fundamentally affects individual
health by determining the amount and types of health care services that
are available to individuals. Class contributes to a culture of poverty that
is built around narratives of pain, struggle, and resistance. It is through
these narratives of suffering and survival that we gain insight into the
agency of marginalized communities and the ways in which such com-
munities make sense of their limited structural resources.
The SES of an individual directly determines the types of preven-
tive services, health care services, and communication infrastructures
he or she has access to. Higher-SES groups are more likely than lower
socioeconomic groups to have better access to a variety of health-related
services. For instance, individuals from higher-SES groups have greater
access to providers than do individuals from lower-SES groups. Simi-
larly, higher-SES individuals have greater access than individuals who
belong to lower-SES groups to cancer screening resources. An increasing
78 Health Communication in the New Media Landscape
number of studies document the disparity in access to basic health care
services among higher- and lower-SES groups in the United States.
Furthermore, disparities exist between higher- and lower-SES groups
in the realms of access to policy platforms, civil society forums, health
delivery organizations, and organizations that evaluate the ways in which
policy gets implemented by health care organizations. In other words,
lack of access to basic health care is supplemented by lack of access to
basic means of communication such that lower-SES individuals also have
minimal access to fundamental communication infrastructures. Also, the
quality of communication experienced by individuals varies by SES such
that low-SES individuals are more likely to experience unpleasant inter-
actions with their providers.
Whereas higher-socioeconomic groups typically can afford a pleth-
ora of preventive services, lower-socioeconomic groups are limited in
the ways in which they can access preventive services in terms of the
costs of these resources, the effort needed to access them, and the
time consumed by individual efforts to take preventive steps. In addi-
tion, higher-SES groups typically live in resource-rich communities that
have greater levels of access to preventive resources of various types,
including parks and walkways for physical exercise, screening facilities,
and food resources. In addition, higher-SES groups also have greater
access to hospitals and medical centers, physicians, nurses, and a variety
of treatment options (medicines and surgical options) than individuals
from lower-SES groups. Of particular concern in the realm of SES is the
health of those who are not covered by health insurance, the health of
the working classes, the health of homeless populations, and the health
of individuals who live in rural communities. Each of these segments
of the population is marked by its lack of access to basic health care
resources.
Racial Disparities
Historically, race-based differences in U.S. society have resulted in dif-
ferential access to socioeconomic resources like educational and em-
ployment opportunities. This situation has meant lower levels of income
in racial minority families, and lower socioeconomic status. Unhealthy
living conditions and limited access to structural resources like transpor-
tation, food, medicine, and insurance are all products of this race-based
social differential, and in turn they exert a considerable impact on the
health and well-being of minorities. Low socioeconomic status, adverse
Chapter 4 Health Communication: Trends and Future Directions 79
health behaviors, and lack of health insurance serve as the primary
pathways through which racial disparities are played out in the realm
of health (Black, Ray, and Markides, 1999; Brodie, Flournoy, Altman,
Blendon, Benson, & Rosenbaum, 2000; Williams & Collins, 2001).
Several studies have demonstrated just how race-based differences
cause disparities in access to medical care. Even after adjustment for
socioeconomic status, health insurance, and clinical status, these studies
show that Whites are more likely than Blacks to receive a broad range
of specific medical procedures (Williams, 1999). Among Medicare inpa-
tients, Williams notes, Blacks are less likely than Whites to receive all
16 of the most common procedures. This demonstrates the prevalence
of prejudiced treatments in health care within the United States, even
when social class is controlled for.
Gender Disparities
In their day-to-day experiences of health, women regularly experience
limited access to a health care system that is dominated by men, funded
and supported by a health care industry that is run by men, and regu-
lated by policy makers who are mostly men (Tong, 2002). Women’s limit-
ed access is the result of such factors as lack of financial resources, lack of
time because of household commitments, the epistemological construc-
tion of a medical system that is unresponsive to women’s personal ex-
periences, and fundamental differences in communication expectations
and goals of patients and their providers. Limited access also is a key
issue regarding women’s access to adequate and healthy food, spaces for
exercising, and screening programs. Worth noting are the ways in which
race and class interact with gender to further marginalize women.
The many issues surrounding disparities in health care services,
access, and delivery raise numerous questions for health communica-
tion researchers. What is the role of health communicators in address-
ing these disparities? Given the complementary patterns of disparities
in distributions of health care resources and the unequal distribution
of communication infrastructures and resources, what are the ways in
which health communicators can reach out to the underserved seg-
ments of the population? What communication processes and strategies
might prove meaningful in addressing the structural disparities in health
care? How might current and future research in health communications
develop strategies for challenging and transforming unhealthy struc-
tures in health care? What are the ways in which participatory processes
80 Health Communication in the New Media Landscape
in health communication might be organized in order to bring about
changes in the unhealthy structures that lie at the root of health care
disparities? What are the communication processes through which cul-
tures can be theorized and understood as entry points for communicat-
ing about issues of health and for creating accessible health care? What
communication processes and strategies might be deployed in order to
create and sustain community capacities, particularly in those communi-
ties that are most likely to be underserved and have minimal access to
basic health capacities?
GRAND CHALLENGES IN HEALTH CARE COMMUNICATION
What are the grand challenges in health communication, and what are
the ways in which the next generation of health communicators might
respond to these grand challenges? The trends reviewed in the previous
section underscore the importance of addressing issues of access, culture,
quality, and technology in health communication theorization, research,
and practice (more on each of these to follow). My goal in this section is
to outline some central questions for the next generation of health com-
munication research and suggest ways in which these questions might
be addressed through the theorization, research, and practice of health
communication. Ultimately, my hope is that this section will open up
new opportunities for dialogue in health communication about the ways
in which health communication scholars can go about providing com-
municative entry points for responding to the major trends in the health
care industry.
Culture-Centered Approach
The culture-centered approach to health communication provides a
theoretical entry point for addressing the major challenges facing health
communicators today (Airhihenbuwa, 1995; Dutta, 2007a, 2007b; Dutta-
Bergman, 2004d, 2004e). Challenging the top-down processes reflected
in much of the existing health communication theory and research, the
culture-centered approach suggests that health communication is em-
bedded within local contexts and is itself a culturally situated process
that is continuously negotiated.
In the culture-centered approach, the emphasis is on communica-
tive meanings and the ways in which these meanings are constituted by
Chapter 4 Health Communication: Trends and Future Directions 81
members of a culture as they negotiate cultural contexts and social struc-
tures in their day-to-day health experiences. It further suggests that a cul-
turally centered understanding of health communication processes leads
us to new ways of thinking about health that have otherwise been disre-
garded. Therefore, the approach highlights the importance of listening
to local communities and creating dialogic spaces for local participation
through which locally narrated issues might be voiced and that might
serve as axes for structural transformations. The creation of participatory
spaces in local communities and of spaces for dialogues between local
communities and external stakeholders serves as the basis for developing
health communication applications that are directed toward addressing
the needs of local communities. In the culture-centered approach, the
emphasis of health communicators is on creating and sustaining partici-
patory infrastructures that facilitate the development of health solutions
driven by the articulations of local communities.
The culture-centered approach foregrounds the elements of culture,
structure, and agency in the construction of health meanings (Dutta,
2007b). Figure 4.2 outlines the basic tenets of the culture- centered
approach. Structure is one of the core components of the culture-
centered approach and refers to the institutions, policies, codes, rules,
and processes that determine and constrain the health choices that are
available to community members. The emphasis of the culture-centered
approach, therefore, is on addressing health care disparities and on
issues related to the lack of access discussed in the previous section. That
many of the health experiences of individuals, groups, and communi-
ties are structured is an invaluable realization in health communication
research, as it shifts the emphasis from the traditional individual-level
approach of health communication to emphasizing the role of health
care structures in health experiences.
Culture reflects the dynamic and complex web of contexts within
which health meanings are negotiated. Cultures provide the scripts for
understanding and interpreting structures.
Agency reflects the capacity of local community members to make
choices and to participate in processes that negotiate and seek to trans-
form the structures of health.
The rest of the chapter will explore the ways in which the culture-
centered approach provides a meaningful theoretical, methodological,
and pragmatic lens for envisioning a health care communication sys-
tem that suggests insights about responding to these grand challenges.
The culture-centered approach to health communication is built on the
82 Health Communication in the New Media Landscape
central notion that the voices of local communities ought to be the cen-
terpiece of health communication research. Furthermore, it stresses that
the voices of these local communities have been systematically silenced
by the top-down health communication programs that have often taken
for granted problem and solution configurations in local communities.
Although formative research is often done in the early stages of health
communication programs, such formative research almost always prede-
termines the nature of the problem and takes for granted the character-
istics of the solutions that are to be diffused in the communities.
Health Care Access
As reiterated throughout the chapter, access is one of the important is-
sues in health care. That certain segments of the population do not have
access to some of the basic capacities of health care is a key realization
that ought to provide the guiding vision for the next generation of health
communication research. The basic necessities of health care need to be
brought to the forefront, and health communication scholars ought to
play a pivotal role in understanding the ways in which communication
strategies might be used to build basic health care capacities in local
Figure 4.2 The Culture-Centered Approach to Health Communication
Chapter 4 Health Communication: Trends and Future Directions 83
communities. Furthermore, although much of the existing health
communication work has taken issues of access for granted, the next
generation of health communication research can begin by starting to
interrogate the accessibility of communicative spaces, particularly in the
realm of those communities that have traditionally been marginalized.
In a nutshell then, the emphasis of future health communication ought
to be on:
Examining the ways in which communicative processes, strategies
and tactics might go about developing access to health care infra-
structures in underserved communities. Note the emphasis here
on the mobilization and community organizing aspects of commu-
nication in order to build basic health capacities in underserved
communities.
Examining the ways in which communication scholars and prac-
titioners might create points of access to communication infra-
structures (e.g., communication technologies, communication
platforms). Future research ought to examine the roles of com-
munication theorizing, research, and practice to create points of
access to community participatory platforms for setting health
care agendas.
Examining the processes and strategies through which commu-
nication skills might be developed among health care experts for
listening to the voices of underserved communities locally, nation-
ally, and globally. The thought process is complete.
Culture
That culture is central to the communication of health meanings is a key
tenet in an increasing body of health communication work. The impor-
tance of the role ascribed to culture in health communication processes
has grown with the realization that health care professionals ought to
be sensitized to the changing cultural landscape of the United States,
coupled with the rapid demographic shifts within the United States.
Furthermore, the concept of culture has become particularly relevant
in the context of health communication processes as an increasing num-
ber of scholars have questioned the “universal” logic of health that runs
through much of health communication scholarship and application. On
one hand, health communicators have started articulating the value of
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84 Health Communication in the New Media Landscape
developing culturally sensitive interventions that take into account the
cultural characteristics of local communities; on the other hand, a grow-
ing body of work on the culture-centered approach has discussed the
importance of local participation in the articulation of problems and in
the development of solutions. The understanding that culture is impor-
tant serves as the foundation for:
Examining the role of culture in the realm of health care decision
making. What role does culture play in the ways in which indi-
viduals, groups, and communities construct meanings of health?
How does culture constitute identities of individuals, groups, and
communities, and how do these identities interact with meanings
of health, health beliefs, health care decisions, and the ways in
which the decisions are practiced in local communities?
Examining the role of culture in developing health-related mes-
sages. What are the ways in which culture shapes the ways in
which individuals, groups, and communities perceive health and
construct the various barriers to health? What are the strategies
for taking culture into account in the development of health com-
munication messages? How can health communication be respon-
sive to the variances in cultures? Understanding the infl uence
of culture in health communication shapes the framework for
cultural sensitivity programs.
Examining the role of culture in the development of communi-
cation strategies for addressing unhealthy structures. What are
the ways in which unhealthy structures play out in the local cul-
tural contexts of underserved communities? What are the health
ramifi cations of such structures? What are the processes through
which structural features marginalize certain cultural communi-
ties? What are the mainstream communication strategies that
are utilized in order to marginalize local communities? How can
transformative communication processes and strategies that are
directed at addressing the underlying structures that manifest in
health care disparities be developed?
Developing culture-centered approaches to health communica-
tion that underscore the relevance of cultural context and com-
munity agency in articulating health communication problems and
health solutions in local communities. Ultimately, the goal of the
culture-centered approach is to develop communicative solutions
that emerge from within the community through the involvement
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Chapter 4 Health Communication: Trends and Future Directions 85
of community members. The emphasis is on creating participa-
tory spaces for the discursive co-constructions of health issues
and the communication of these issues to external stakeholders
who infl uence policies of health. The articulation of local cultural
contexts in the health communication process lies at the core of
culture-centered health communication.
Health Care Quality
An Institute of Medicine report on health care in the United States
suggests the importance of addressing the quality of health care that is
being delivered within the United States. Questions of quality not only
are salient in the United States but are quintessential in the delivery
of health care across the globe. What is the quality of the health in-
formation, health resources, health services, and preventive services
that are available to the different segments of the population? What
are the within-population differences in the ways in which the quality
of health information resources, preventive services, and health care
services are delivered? What are the relationships between differentials
in these patterns and differentials in the quality of health communica-
tion resources? More specifically, the emphasis on quality plays out in
the following realms:
Quality of provider–patient communication. This line of research
examines the differences in communicative patterns in different
cultural communities, and the ways in which these communica-
tive patterns in physician–patient interactions vary by race, gen-
der, socioeconomic status, and other characteristics. What are
the ways in which culture infl uences the constructions of health
and relationships with health care providers? What are the infl u-
ences of social structures in the quality of experiences that pa-
tients have with providers? How do patients enact their agency in
the context of the physician–patient relationship, and how does
this enactment infl uence the quality of the physician–patient
interaction?
Quality of organizational (e.g., hospital, agency) communication.
What are the ways in which health care infrastructures infl uence
the quality of communication in hospitals and other health care
agencies? What are the cultural features that play out in the realm
of the quality of communication in such organizations?
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86 Health Communication in the New Media Landscape
Quality of health information (trust, completeness, comprehen-
sibility, etc.). What are the indicators of the quality of health in-
formation? What are the strategies consumers use to evaluate the
quality of health information that they receive? How do these
quality evaluations vary in different sectors of the population?
What strategies might be utilized to develop communication pro-
grams that are directed toward training patients in strategies for
evaluating the quality of health information?
Quality of communication technologies. In addition to the em-
phasis on health information, an increasing number of health
communication projects emphasize the importance of evaluat-
ing the quality of health communication technologies. This em-
phasis on technologies is particularly relevant in the delivery of
health care, given the growing use of communication technolo-
gies as avenues for delivering health services, particularly to the
underserved sectors of the global population. What are the ways
in which measures of quality might be developed for evaluating
health care technologies? How can these measures of quality be
responsive to the cultural contexts within which the technolo-
gies are constituted? What are the ways in which the quality of
health care technologies can be located and discussed within the
context of the social structures within which the technologies are
deployed?
Quality of health infrastructures. Finally, an increasing number of
health communication scholars have drawn attention to the qual-
ity of health care infrastructures and the ways in which infrastruc-
ture quality is distributed within the population.
Technology
As discussed in the section on the trends in health care, technology has
emerged as a key player in the delivery of health information, preven-
tive resources as well as health care resources. The culture-centered ap-
proach suggests that technology exists at the intersections of structure,
culture, and agency. On one hand, access to technology (and lack thereof)
creates and constrains the possibilities for health care in local commu-
nities, and on the other hand, it is through the use of technologies that
individuals, groups, and communities create spaces for communicating
about social structures and transforming these structures. The meanings
of technologies become culturally localized as technologies take on local
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Chapter 4 Health Communication: Trends and Future Directions 87
meanings for local community members and they use these technolo-
gies to participate in their health care decision making. The intersections
of technologies and participatory spaces provide new ways of thinking
about the ways in which health communication technologies might be
harnessed toward the goal of creating and sustaining equitable, acces-
sible, and democratic health care processes. This chapter’s review of the
interdisciplinary connections around technology suggests that the next
generation of health communication research ought to focus on:
Examining uses of technology for health-related purposes such
that technologies can be utilized in order to deliver need-specifi c
solutions. In this sense, the technology serves as a resource for
solving community-specifi c problems and is conceptualized as an
element of community capacity. The applications developing from
this line of work focus on creating technology-based infrastructures
in underserved communities and developing programs that teach
the skill sets needed to utilize the technologies. Furthermore, a
use-based perspective also informs the ways in which technology-
based platforms might be developed in order to serve the needs
of users.
Examining consumer access to health care technologies in
order to be able to create sustainable technology access points
for individuals, groups, and communities. This line of research
provides the impetus for studying the correlations between dig-
ital divides and other kinds of disparities within the population.
For instance, the differential patterns of access in broadband
technologies are often correlated with socioeconomic dispari-
ties, thus suggesting the importance of locating technologies in
the realm of broader structures. Applications developing from
this line of work provide the basis for the development of tech-
nology infrastructures in underserved communities such that
the technologies might be utilized by community members for
transformative politics.
Examining consumer knowledge about using technology for
health-related purposes. Health communication researchers are
increasingly pointing out that people’s knowledge of ways to use
technology makes a great deal of difference in consumer uses of
technologies for health-related purposes. Health communica-
tion research exploring the knowledge of technology uses locates
these differential knowledge patterns in the context of broader
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88 Health Communication in the New Media Landscape
population-level characteristics. Health communicators have
the opportunity for suggesting the ways in which differences in
knowledge play out in the realm of health care usage patterns,
health experiences, and a variety of outcomes, including morbid-
ity and mortality patterns.
Developing e-health literacy programs to train patients in gather-
ing, evaluating, and using health information. It is through these
literacy programs that individuals, groups, and communities in
the underserved sectors of the population can be equipped with
skills that enable them to access health care resources. E-health
literacy programs need to be developed in a manner that takes
cultural characteristics into account.
Examining the ways in which technology-based platforms might
be mobilized to address and transform unhealthy structures. In
this realm, community-based activism projects have started look-
ing at ways in which technologically mediated platforms serve as
communities for individuals to mobilize around issues of health
and communicate their concerns about these issues to key policy
makers.
CONCLUSION
Health communication scholars have significant opportunities for influ-
encing the landscape of health care in the United States and globally.
That communication is central to the realization of health is an important
understanding that has shaped the practice of health care today (Kreps,
2003). The ways in which individuals, groups, and communities develop
meanings of health and the processes through which they communicate
about health are central to practices of health care. Furthermore, experi-
ences of health care are situated within broader structural contexts that
determine the communicative resources available to individuals, groups,
and communities as they participate in their day-to-day health practices.
It is in the realm of the broader structures that health experiences get
defined. Furthermore, structures become meaningful to cultural mem-
bers through the local cultural contexts that provide scripts for inter-
preting structures and for negotiating them. Therefore, in addition to
looking at individual behaviors, there is an increasing need for the next
generation of health communication scholarship to start exploring more
macro-level features such as infrastructures. Furthermore, there is an
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Chapter 4 Health Communication: Trends and Future Directions 89
increasing need to understand the culturally constituted and contested
nature of health communication processes.
The complex interplay of structure and culture also draws our atten-
tion to the ways in which local meanings of health are continuously defined
in the terrain of broader structures. In summary, communication about
health is socially constituted in the realm of broader structures and is
embedded within local cultural contexts. The next generation of health
communication research is charged with the broader agenda of taking
this ecological approach to understand the roles that health communica-
tors might play in the delivery of accessible and high-quality health care.
Such an ecological approach calls for polymorphic theorizing that brings
together multiple theoretical approaches in order to develop a more
meaningful understanding of the complex processes in health care today.
Furthermore, the next generation of health communication scholarship
ought to engage in multi-level approaches that are sensitized to incor-
porating the micro-, meso-, and macro- level contexts of health commu-
nication. Also, more scholarship is needed in multi-method approaches
that tap into various methodological approaches for studying health care
problems and developing communication solutions to these problems.
In summary, there is need for greater dialogue across disciplinary and
paradigmatic emphases in order to develop fruitful spaces of conversa-
tion for challenging the grand health care challenges of tomorrow.
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93
5
Physicians, medical researchers, health policy specialists, and health com-
municators have crucial information that citizens and consumers need so
they can make better decisions about their health. Indeed, health com-
munication of a variety of types is crucial for informing and persuading
people to make better lifestyle choices, as well as aiding them in manag-
ing their own and others’ medical conditions.
Twenty years ago health communication was mainly accomplished
through interpersonal interactions between patients and health care pro-
viders, or through mass media vehicles like news stories, television/radio
public service announcements and commercials, and printed materials
that were picked up or mailed. But in the last few years, the digital revo-
lution has completely changed the nature of both interpersonal and mass
communication. Much of interpersonal communication is now actually
mediated by cell phone, text messaging, e-mail, and social networking
vehicles like Facebook and MySpace. Correspondingly, much of mass
communication has become “personalized” with options like RSS feeds,
targeted e-mail, cell phone–delivered messages, and customized adver-
tising that can be delivered by mail or through some digital device.
Indeed, as the number of choices for communication modes and devices
has grown, the distinctions between interpersonal and mass communica-
tion are blurring.
Emerging Trends in the New
Media Landscape
MARGARET E . DUFFY AND ESTHER THORSON
94 Health Communication in the New Media Landscape
Along with these effects of the digital revolution have come sea
changes in how people choose to communicate with each other and how
they are reached by professional communicators with news, informa-
tion, and persuasive messages. It is crucial that health communicators
understand this new media landscape and people’s behavior in that land-
scape. This understanding will enable them to change their approach
to doing health communication, allowing them to take advantage of the
opportunities for greater reach and effectiveness.
People today are perceiving, remembering, and engaging with
information in ways that are revolutionizing communication systems.
The Project for Excellence in Journalism’s most recent State of the
News Media Report (2008) provides some startling statistics. People
spend an average of 22% of their day online. The news media are in
a state of crisis, with television and newspaper news audience erod-
ing faster each year. There is a growing divide between advertising and
news/entertainment content. In the past, advertisers needed news and
entertainment shows to get into the consumer’s home by riding in with
newspapers, news magazines, and radio and television programming;
this is no longer the case. More and more advertisers are reaching peo-
ple with Web sites, drawing them with use of search engines, and enter-
ing the fray of social network activity like that on YouTube, Facebook,
and MySpace. Of course, without advertising, many forms of news and
entertainment companies are losing their main source of revenues and
indeed, the advertising-dependent business model for news appears to
be expiring.
As new technologies and massive behavioral changes in the public
roil mainstream media businesses and outlets, traditional dissemination
practices are becoming less and less effective. Moreover, in the new
digital communication world, much of the health information available
is riddled with omissions, factual errors, and undisclosed commercial
interests (Hoffman-Goetz, 2000; Slater, 2003; Walji, Sagaram, Sagaram,
Meric-Bernstam, Johnson, Mirza, & Bernstam, 2004). In fact, while
the amount of authoritative health and medical knowledge has grown
exponentially, abilities to effectively disseminate that information have
become obsolete.
Given these changes, it is crucial that health communicators realize
and understand the difficult challenges presented by a new and bewil-
dering media landscape. In this chapter, we suggest these challenges can
be successfully countered with sophisticated research-based strategies
focusing on individuals’ media choices and behaviors.
Chapter 5 Emerging Trends in the New Media Landscape 95
THE HEALTH COMMUNICATION MEDIA CHOICE MODEL
This chapter introduces the health communication media choice model,
a research-based strategy that shows how health communicators can de-
velop effective information programs in the new media landscape. First,
we sketch the primary features of today’s media world, describing how
consumers are using media and technology to fulfill their needs and
desires. Second, we briefly review some of the most salient health com-
munication research offering insights into how individuals are seeking
and accessing health information in the current environment. Third, we
offer a theory and an organizing framework that suggests a communi-
cation needs and features-based segmented audience strategy. We link
these communication needs and features with the notion of aperture,
a window of enhanced opportunity for sending a persuasive and/or in-
formative message at the optimal time. Finally, we outline a research
strategy that describes how health communicators can design effective
evidence-based campaigns.
In developing our model, we drew on a number of important
resources. First, in work with the Newspaper Association of America
(2006) we utilized the Life Styles database, a highly respected survey
conducted yearly by the advertising agency DDB. Using that database,
we were able to examine the trend of consumer media choices across
the years 1995, 2000, and 2005. Further, we gathered and continue to
compile extensive research from a wide variety of secondary sources to
gain additional insights into media changes and apply them to health
communication questions.
WHAT’S HAPPENING IN TODAY’S MEDIA?
As consumers abandon traditional media channels, news organizations,
advertisers, and media companies have scrambled for explanations and
solutions. Health communicators are seeking new approaches as past tac-
tics using print and broadcast media have become increasingly ineffec-
tive. Expanding choices have shifted power from authoritative sources as
consumers take control in searching for information and entertainment
and even in creating content.
The ever-expanding array of technology-enabled media features
allows people to select among those they find most desirable in fulfill-
ing their communication needs. They may choose the power of search
96 Health Communication in the New Media Landscape
in their shopping activities. Those who want to express themselves may
be drawn to health communication models that allow them to create or
contribute health messages, comment on products or services, or com-
municate with companies.
Evidence clearly shows that the digital environment has changed
media behaviors for almost everyone. As mentioned above, the array of
media choices available has exploded since 1975. Viewers may now watch
news, sports, and entertainment videos online and on their mobile de-
vices. Advertising.com reports that 62% of consumers, a significant per-
centage of whom are 35 and older, are watching videos online (Loechner,
2007). The most youthful of adults might be called “screen-agers” in light
of the amount of time they spend watching the screens of their phones,
their iPods, their video games, and of course television. Figures 5.1 and
5.2 illustrate the enormous changes that have occurred in media choice.
Consumers are embracing the options available to them, clearly
recognizing the opportunity to construct their media, information, and
advertising worlds through personalized content, time shifting, and other
media features. This is seen in growth of daily RSS feeds, TiVo, and pod
and vodcasts.
Migration to the Web
It is no surprise that consumers are fulfilling many of their news and en-
tertainment needs via the Internet and spending less time with traditional
Figure 5.1 Content/Delivery Options 1976
Copyright 2006 wolzein l.l.c.
Chapter 5 Emerging Trends in the New Media Landscape 97
media. A 2007 Pew survey revealed that 71% of U.S. adults are online
(Pew Internet & American Life Project, 2007). A Harris poll reported
that the number of U.S. adults who have ever gone online seeking health
or medical information increased from 136 million in 2006 to 162 million
in 2007. The poll refers to health seekers as “cyberchondriacs,” and the
results suggest that online information significantly affects doctor–patient
interactions (Harris, 2007).
Demographic differences in Internet and technology use do exist,
but they are not as significant as one might expect. The same percentage
of women and men use the Internet, though there are age differences:
85% of those between the ages of 18 and 29, 78% between the ages of
30 and 49, 69% between the ages of 50 and 64, and 31% 65 and older
are online. Indeed, baby boomers (those born between 1946 and 1964)
are adopting technology much faster than the next older generation, and
they are expected to continue their technologically advanced behaviors
as they age. Boomer behaviors are important to health professionals as
this large cohort ages and encounters age-related health challenges.
According to the most recent U.S. census data, by 2010 there will be
84 million adults between the ages of 43 and 61 in the United States.
Mediabuyerplanner.com reports that this cohort is spending less time
and money on television and newspapers, and more on Internet-related
technologies and cell phones (“Boomer Media Consumption,” 2007).
News organizations, advertisers, and information dissemination spe-
cialists of all kinds are finding that approaches that were successful in
Figure 5.2 Content/Delivery Options 1976
Copyright 2006 wolzein l.l.c.
98 Health Communication in the New Media Landscape
the past are no longer effective. Advertisers are responding to changing
consumer habits, and Internet ad spending grew 34% in 2006 to $16.8
billion, a record high (Peterson, 2007).
Further, our research shows decreased reliance on traditional media
sources for information. Key indicators are changing responses to the
survey question “I need to get the news (national, international, local)
every day.” Across all ages, agreement was down 6% from 1995 to 2005,
agreement among baby boomers was down 5% from 1995 to 2005, and
agreement among those 60+ down 8% from 1995 to 2005. In addition,
the mean of the youngest group’s expressed need for news is 29% lower
than oldest group’s. Clearly, approaches that rely on print and broadcast
news media will be increasingly less effective in health campaign and
dissemination initiatives.
Our research also reveals that people desire personalized input and
customized content. As mentioned above, this is seen in the growth of
RSS feeds, personalized home pages, TiVo, personalized cell phone ring
tones, and a growing preference for news with a viewpoint that is in con-
cert with the beliefs of the viewer. For example, personalized ring tone
sales are estimated at more than $5 billion worldwide (Pogue, 2007).
Another aspect of the trend toward customized and personally
relevant media is the impulse to create content. Many observers have
commented about the growth of blogs, podcasting, and other consumer-
generated content. Acccording to Technorati, users create about 120,000
new blogs each day, or 4 new blogs every second (Sifry, 2007).
Brands are now using blogs as part of their strategic planning, rec-
ognizing that some bloggers and their fans are extremely influential
as they comment upon and review products, services, and advertising
campaigns. In addition, market researchers are using blogs and social
networks as guides for analyzing online consumer behavior (Havenstein,
2007). The Wall Street Journal, in its “Blog Watch,” reports that among
the range of health-related blogs are those devoted to dealing with aller-
gies and inability to digest gluten (Bright, 2007).
HEALTH COMMUNICATION RESEARCH IN THE NEW
MEDIA LANDSCAPE
Health communication researchers are responding to consumers’ chang-
ing media behaviors. A bibliography compiled by Petya Stoeva (2006)
reviewed 95 studies on new media and health communication. One key
Chapter 5 Emerging Trends in the New Media Landscape 99
finding of that review was that individuals seeking health information rely
on search engines (Peterson, 2003 ). Moreover, consumers’ search habits
are cursory, as most people access Web sites only from the first page of
the search results (Peterson, 2003).
A related concern is the quality of the information found through
Internet searches. Some studies identified significant gaps and omis-
sions (Fahey et al., 2003; Walji et al., 2004) and even harmful infor-
mation (Walji et al., 2004). Researchers also uncovered concerns about
commercial sourcing and sponsorship of health-related sites (Slater &
Zimmerman, 2003). According to a Pew survey, only 15% of searchers
always verified their search findings, and Fox (2006) extrapolated that
some 85 million people are searching without investigating whether the
information is reliable. A number of organizations are providing specific
instructions to people on how to access quality information about health
from the Internet (e.g., Schnall, n.d.).
Doctor–patient interactions are affected by patients’ access to
health information. The fact that individuals are more informed has
led to the creation of a phenomenon Akerkar and Bichile (2004) calls
the “e-patient,” a patient who “lobbies” for certain types of treatment,
who often has less trust in the physician’s authority, and who may access
online support groups.
Other research shows that online channels that offer support
mechanisms for individuals with various conditions can improve out-
comes (Gustafson et al., 2001, 2005; Lieberman et al., 2003; Reeves,
2000; Shaw, McTavish, Hawkins, Gustafson, & Pingree, 2000). Some
researchers are expressing concern that the digital divide limits the
access of disadvantaged groups, who may not have the resources to use
digital technologies (Fogel, Albert, Schnabel, Ditkoff, & Neugut, 2002;
Gustafson et al., 2005; Kittler, Hobbs, Volk, Kreps, & Bates, 2004; Ride-
out, Neuman, Kitchman, & Brodie, 2005). These studies suggest, as
will be discussed, that health communication initiatives must be “media
agnostic” and begin with the preferred communication channels of the
target audience.
THE HEALTH COMMUNICATION MEDIA CHOICE MODEL
As mentioned above, creation of the model began with extensive and
ongoing review of the academic and professional literature related to
consumer media behaviors. Examination of advertising, newspaper, and
100 Health Communication in the New Media Landscape
broadcast trends showed that media professionals have an abundance of
facts and information about the changes but have few mechanisms with
which to respond strategically to changing consumer preferences. For
example, newspapers tried ongoing experiments with a variety of ideas,
such as youth-oriented print products, social networking, and page re-
designs in hopes of winning back readers and advertisers (Angwin &
Hagan, 2006). As fewer people continued to consume traditional media,
advertisers sought other venues through which to present their persua-
sive messages.
Advertisers once could expect that their messages would enter peo-
ple’s homes attached to newspaper or broadcast content. Similarly, health
messages, PSAs, and other public relations efforts such as news stories
and press releases were delivered packaged in traditional media vehicles.
Traditional health communication techniques and campaigns were usu-
ally premised on people’s reliance on old media and the assumption that
the old media, particularly news content, were authoritative and cred-
ible to target audiences. Effective health communication today must
acknowledge the emergence of the powerful and technologically con-
nected consumer. Unlike the one-to-many model of old media, the new
media world is best imagined as a dynamic network of human beings
and technology. It is a world in which people have access to vast stores of
data and often trust the recommendations of their online friends more
than authoritative sources.
The evidence reveals active consumers who are taking charge of
their communication needs and desires and rejecting passive acceptance
of information. In developing a theoretical model, we began with a ven-
erable and highly researched theory known as uses and gratifications
(Katz, 1950). This theory moves the discussion away from the notion
that media “do” things to people, and toward the idea the people use
media to fulfill various needs. Imagine, for example, the daily tasks and
activities you and your family must perform to meet various needs. Of
course, basic human physiological needs must be met first with food,
shelter, and so on. Similarly, as psychologists have pointed out, humans
have needs beyond the physiological for connections with other people,
including safety, self-esteem, and entertainment.
Our model posits that people have communication needs that drive
them to select communication media and adopt communication behav-
iors that best gratify those needs at a given time. It is important to note
that human beings may choose to fulfill needs in interpersonal and face-
to-face interactions or they may select what we call “mediated” channels.
Chapter 5 Emerging Trends in the New Media Landscape 101
For example, the need to gather information about a health condition
may be filled by a visit to a physician, a call to a knowledgeable friend,
or an Internet search. As more and more media alternatives emerge,
people will choose the sources that best gratify a given communication
need. Another key factor is that different media sources offer different
features such as participation, immediacy, and customization that play
into consumer’s decision making.
A brief review of the evolving literature in the uses and gratifications
tradition will provide better context for the media choice model. Early
on, researchers distilled several important concepts (Katz, Blumler, &
Gurevitch, 1974):
1. The social and psychological origins of needs that;
2. generate consumer expectations;
3. of the mass media or other communication options leading to;
4. different media choices, resulting in;
5. fulfillment of needs (p. 20).
Rosengren (1974) pointed out that individual differences, such as
demographics and lifestyles as well as the different needs individuals
want to fill in differing situations, are critical aspects of choice.
Uses and gratifications research has been usefully summarized by
Rubin (1983, 1994) and by Ruggiero (2000). In addition, researchers
have deployed the theory in a wide range of media, including television
(Babrow, 1987; Conway & Rubin, 1991; Heeter & Greenberg, 1985),
newspapers (Elliott & Rosenberg, 1987), and the Internet (Beaudoin &
Thorson, 2004; Kaye & Johnson, 2002; Rodgers & Thorson, 2000). Lacy
(2000) argued that five communication needs—surveillance, diversion,
social-cultural interaction, decision making, and self-understanding—
interact with variables such a cost, quality, and features in determining
amounts of time people allocate to different media.
In Figure 5.3, the elements of the health communication media
choice model are shown. We next describe each of the elements and
how they work together to form audience choices.
In our research with the news and advertising industries, it became
clear to us that focusing on the four major communication needs self-
identified by individuals in our research provided a powerful yet simple
model on which to base strategic decision making. In our work in health
communication focusing on media choices, this schema seemed most
appropriate as well. Following are the communication needs:
102 Health Communication in the New Media Landscape
1. Connectivity (need to relate, support, engage with and commu-
nicate with others face-to-face or through media)
2. Information (surveillance or the need to gain knowledge impor-
tant for accomplishing goals both large and small)
3. Entertainment (need to be amused, relaxed, and diverted)
4. Shopping (need to acquire goods and services)
Of course, people’s needs can overlap and be important in differ-
ent ways to different people. Searching for health information may be a
diversion to certain individuals, for example. However, it is important to
note that the needs were self-identified by individuals in our research,
rather than imposed by us, so we believe the categories represent indi-
viduals’ psychological realities.
Connectivity
Every instance of media use is motivated by a communication need.
Connectivity is extremely important and can be seen in friendships, re-
ligious affiliations, clubs, and community ties. For example, logging into
Figure 5.3 Health Communication Media Choice Model
Chapter 5 Emerging Trends in the New Media Landscape 103
Revolutionhealth.com communities and belonging to a support group
for a particular condition are connectivity behaviors. Hundreds of You-
Tube videos are related to health and medical procedures. It is common
to see people sharing highly personal information regarding surgeries,
medical experiences, and even the experiences of their children. This
sharing and connecting behavior often involves interactions with un-
known respondents who vicariously share and comment on the posted
data. Social networking sites such as Facebook have hundreds of sites
related to various conditions. For example, a search for juvenile arthri-
tis produced 22 different groups. A study by Wilkin and Ball-Rokeach
(2006) regarding health communication strategies for Latino neighbor-
hoods suggests that effective dissemination strategies involve “storytell-
ing networks” that utilize media, interpersonal, and digital venues.
Information
Informational behavior might involve searching WebMD or going to see
a health professional with specific questions. Usually, however, the con-
sumer turns first to a major search engine. We cannot overstate the impor-
tance of search and search engine optimization for health communication.
Eighty percent of Internet users, or 93 million Americans, have searched
online for one of 16 major health topics. One in five has researched men-
tal health information, and 13% have researched vaccination data. Most
important for health communicators to consider is that fact that people
expect search engines to provide them with reliable health information,
an assumption that is questionable at best (Fox, 2006).
Other data show how consumers are increasingly satisfying their
information needs online:
Thirty-six percent of e-caregivers say the Internet helped them
fi nd advice or support from other people.
Thirty-four percent of e-caregivers say the Internet helped them
fi nd professional or expert services.
Twenty-six percent of e-caregivers say the Internet helped them
fi nd information or compare options (Fox, 2006).
Entertainment
Entertainment as a communication need might be seen as frivolous
to some. However, to be psychologically healthy, human beings must
■
■
■
104 Health Communication in the New Media Landscape
play and be diverted. When seeking entertainment, consumers have a
wide range of sources with which to fulfill that need, including physi-
cal activities and mediated amusements. For certain applications, it is
important that some health-related messages be presented in an ent er-
taining fashion similar to the strategies using humor, sexual appeal, and
other attention-getting devices that advertisers use to “cut through the
clutter.”
In a related area, the growth of celebrity culture is becoming a more
significant part of day-to-day life for many people. For example, celeb-
rity is the only magazine category to maintain circulation and advertising
sales (Project for Excellence in Journalism, 2008). Digital sites includ-
ing popular Web sites such as TMZ.com, Perez Hilton, and Jossip are
also growing (Gossip Websites, 2007). We hypothesize that technology
has enhanced people’s abilities to access celebrity information and has
reduced the informational and psychological distance between consum-
ers and celebrities and this is an important area for future study, espe-
cially in health communication.
Psychologists have long observed that audiences are affected by
celebrities’ comments, behaviors, and health issues. Brown and Basil
(1995) studied the impact of the revelation of Magic Johnson’s HIV diag-
nosis and found that because of parasocial factors—factors concerning
relations that occur between people and either real or fictional people
represented in the media (Horton & Wohl, 1956)—celebrities can be
an important mediating variable in health communication. Similarly,
Brown, Basil, and Bocarnea (2003) studied attitudes toward a celeb-
rity athlete, and their results suggested a parasocial relationship with
the athlete leading to identification with the celebrity and promotion
of his attitudes and beliefs. Cram, Vijan, Inadomi, Cowen, Carpenter,
and Fendrick (2000) found that significantly improved colon screening
behaviors resulted when Katie Couric publicized her own procedure.
Boon and Lomore (2001) found that celebrities’ behaviors may affect
young adult’s identities and self-esteem.
Other research revealed some intriguing trends: 45% of adults sur-
veyed said that celebrity opinions make a large difference on issues and
causes the celebrities promote (Harris, 2008). Non-celebrity business
owners say they see celebrities as role models (Sherman, 2004).
Of course, there are negative and unintended health-related con-
sequences that can result from celebrity obsession. Randerson (2007)
reported on a range of unsubstantiated health and prevention claims
from celebrities such as Madonna that may be not only misleading,
Chapter 5 Emerging Trends in the New Media Landscape 105
but dangerous. For example, a British celebrity suggested that certain
types of vaccinations thought to be sound by the medical community are
dangerous.
Shopping
Shopping behavior might involve accessing canadadrugs.com, going to
the local drugstore, or ordering vitamins online. This is another area that
might seem trivial, though for virtually every economy in the world, con-
sumer behaviors are major drivers of economic success. Increasingly,
health consumers are moving away from dependence on sources from
which they have traditionally bought health-related goods and services,
and they are using searches to inform their purchase decisions. Consum-
ers now have expanded, and even global, resources from which to choose.
Individual Differences in Communication Needs
Individuals’ communication needs vary based on their demographic,
cultural, and personal variables and are then expressed in different ways
when they are interested in health matters. There is not sufficient space
to fully discuss this here, but marketers and media scholars have long
known that age, education, gender, and other individual characteristics
are among the variables that affect media choice (Also see the more de-
tailed review of demographic patterns in chapter 2.)
Someone who is twenty has different media and health priorities than
someone who is 50. The generation to which one belongs is an impor-
tant differentiator of how communication needs are activated. Millions of
young people are spending hours on social networks, and older people in
the United States are accessing online dating in increasing numbers with
mainstream sites such as eHarmony showing significant growth among
Baby Boomers (Marsan, 2008). While these demographic data are valu-
able, they offer only a limited picture of how people are behaving in this
new media landscape. As mentioned above, members of older genera-
tions should not be stereotyped as technophobes based only on age.
The Concept of Aperture
Introduced by advertising executive William Wells, the concept of ape r-
ture refers to the optimal time when people are most receptive to a per-
suasive message (Wells, Moriarty, & Burnett, 2006). Apertures can be
106 Health Communication in the New Media Landscape
defined in terms of dayparts (e.g., readiness for vitamin messages in the
morning) or in terms of times of life or types of human connections with
a particular health issue. For example, when a celebrity is diagnosed
with an illness, audience members who care about that person or iden-
tify with her or him might be more receptive to promotions for health
screening for the illness.
There is an important need for more research in this area, but as
Cohen and Kaczorowski (2005) report, there are differences between
different life stage groups that are important to all media, health com-
municators in particular. For example, they found that older people seek
information on Sunday mornings, while younger adults search for enter-
tainment on Sunday mornings. Thus health information in terms of news
features in Sunday newspapers can be very valuable to one demographic
but unseen by others.
Whether health communicators are using digital or traditional media,
aperture is important. Beyers (2004) showed that the Internet and tele-
vision show clear daypart patterns. As Thorson and Thorson (2006)
found, differences in different types of news—local versus national, for
example—can be aperture sensitive in different ways with different seg-
ments of the population. It seems clear that health communicators must
be highly sensitive to variations in media use by different segments of
the population.
Media Features
Another key element of the media choice model involves media features.
Consider the popularity of mobile telephones. They have increasingly
sophisticated features that make them more than just a simple phone.
People use them to text message, send and receive e-mail, watch videos,
listen to music, check sports scores, and other activities. What is impor-
tant for the health communicator is the recognition that different media
have features that make them attractive to different target audiences who
fulfill their communication needs at different times of the day. A broad-
cast public service announcement offers visuals and rich media that are
attractive to audiences viewing certain types of news or entertainment
programming. Newspapers are appealing to audiences who value porta-
bility, exposure to unexpected content, or the ritual of the reading expe-
rience. Digital media offer instant updates, the capability to personalize
and customize content, and the chance to share with like-minded others.
Specifically, new media offer at least these seven features:
Chapter 5 Emerging Trends in the New Media Landscape 107
1. Immediacy: the ability to access information on demand
2. Mobility: the ability not only to transport the product/service but
to get updated content wherever one is
3. Rich media: video and audio delivered online
4. Participation: the ability to create and publish (personal
authorship)
5. Search: the ability to quickly and easily find accurate information
on topics of interest
6. Customization: the ability to tailor the types and frequency of
messages to personal interests
7. Time shifting: The ability to download digital content and replay
it at the consumer’s convenience
Our research shows that features of customization, personalization,
and participation are important to many key target audiences who are
abandoning media that do not offer such capabilities.
Table 5.1 shows how these features are distributed across the major
news media.
As the uses and gratifications theory suggests, after individuals
choose a medium and use it, they decide whether the use satisfied the
need. If they are satisfied, they continue using that medium. If not, they
search for a better or more effective media.
Voice in Health Communication
The model emphasizes the concept of voice, a way to describe changing
expectations and desires regarding what sources are credible, engaging,
and trustworthy. In years past, the model of the trusted anchorman was
that of Walter Cronkite, who told audiences, “And that’s the way it is.”
Audiences believed that quality newspapers were credible and had a
belief that the news did not express opinions, but facts. However, we
are seeing a society-wide change in that acceptance of the authoritative
voice of the news (e.g., Gillmor, 2006). As audiences depend more and
more on nontraditional sources of information, they are saying they have
less confidence that mainstream media are trustworthy or objective. A
Pew study (2002) found that:
1. From 1985 to 2002 the number of Americans who thought
news organizations were highly professional declined from
72% to 49%.
108 Health Communication in the New Media Landscape
2. The number of those who felt news organizations tried to cover
up their mistakes rose from 13% to 67%.
3. The number who thought news organizations were biased politi-
cally rose from 45% to 59%.
4. The number of those who thought news organizations got facts
straight fell from 55% to 35%.
Other research confirms this. Research by MTV suggests that young
people define news and news values differently, saying they want facts
only if they are offered in the context of their own lives (Catapano, 2006).
USABILITY FEATURES OF EACH MEDIUM
MEDIA FEATURES MEDIA
NEWSPAPERS RADIO TV CABLE NEWS INTERNET
Participation easy X
Customizability X
Time shifting X X
Time fl exibility
(24/7)
X X
Mobility X X
Interactivity X
Search capacity X
Immediacy X X X X
Images X X X
Sound X X X X
Doesn’t require high
level of attention
X X X X
Doesn’t require
reading skills
X X X X
Table 5.1
Chapter 5 Emerging Trends in the New Media Landscape 109
Jarvis, quoted in a Carnegie study, remarked that young people like The
Daily Show because it is “bringing news down off its pedestal and pre-
senting it at eye-level” (Brown, 2005, p. 9). The popularity of talk shows
and Fox News is an example of how “news with an attitude” (a very dif-
ferent voice from the authoritative one) is becoming more popular and
more trusted.
News and advertising created by nonprofessionals are becoming
increasingly visible. The notion of “citizen journalism,” or reporting
and blogging by those who are not journalists, is growing in power and
audience (Gillmor, 2006). Changes in the perceived credibility of new
voices is a key aspect of the media choice model. In creating content
and selecting media, health communicators must use the preferred
voice of the target audience to convey information. According to the
model, some audiences prefer health information that comes from
a long-established source and find it most credible. We call this the
authoritative voice. Others find that health information that seems to
share their own viewpoints and attitudes is most trustworthy; we refer
to this as the opinionated voice. Others prefer getting health informa-
tion from the perspective of people who are experiencing it; we call this
the created voice.
IMPLICATIONS FOR HEALTH COMMUNICATION
As we suggested earlier in this chapter, uses and gratifications theory
and the health communication media choice model offer insights into
why health consumers behave as they do and how health communica-
tors can create research-based campaigns that have a better likelihood
of success. The gratification people receive from the media has led to a
redistribution of time spent on media and to the sources people trust,
enjoy, or act upon.
Following is a brief discussion of how the health communication
media choice model offers a research protocol.
Measure the Communication Needs and Preferences
of the Target Audience
First, crucial questions concerning the level of importance of vari-
ous factors to people’s choices to get health information from one
form of media over another must be answered by the target audience.
110 Health Communication in the New Media Landscape
Specifically, the researcher seeks responses for each of the communica-
tion needs. The following are examples of variables that the researcher
might investigate.
Health Information Related to Connectivity Needs:
Getting health information I can share with my friends.
Getting health information that makes me feel smarter.
Knowing who wrote or compiled the health information.
Being able to see who is reporting the health information.
Health Information Related to Information Needs:
Alerting me to damaging or harmful situations.
Providing me with information I can use to improve my condition
or that of a friend or family member.
Identifying new research in nutrition or exercise or research that
offers information on disease prevention.
Health Information Related to Entertainment:
Entertains me, makes me feel relaxed, is supportive of my point
of view.
Diverts me with health-related stories about celebrities.
Provides me with important ideas in a way that is amusing or
diverting.
Measure Target Audience Preference for Media
Features
The second step in the research design involves measuring what features
different audiences prefer in message delivery. This relates to those issues
of immediacy, customizability, and participation discussed previously.
How important are each of the following in your choice to get health
information from one form of media over another?
Getting health information when I want it.
Getting only the health information I want.
Getting health information as soon as it becomes available.
Getting health information that’s easy to understand.
Getting health information that’s rich with images.
Getting health information that I can share with my friends.
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Chapter 5 Emerging Trends in the New Media Landscape 111
Measure Aperture for the Health Messages
You Intend to Convey
The issue of aperture is similarly critical and must be measured for each
target audience.
What media do you use in the ___ time of day to get health informa-
tion, stay connected with others, be entertained, purchase health-related
products?
Just as the businesses of news, advertising, and promotion have
become more complex and fragmented, health communication faces
important challenges. As the mass media become ever more fragmented
and increasingly personalized, health communicators must constantly
adjust their strategic and creative approaches so that they align with
changing audience needs. Although the media world has become more
complex, it also offers unprecedented opportunities to bring health con-
sumers the information they need in the most effective ways possible.
The United States faces daunting challenges in the areas of preven-
tion and treatment of conditions, which are complicated by an aging
population, millions of uninsured or underinsured citizens, and a grow-
ing divide in income and access to health resources. In the developing
world, even greater challenges face health policy makers, medical pro-
viders, researchers, and dissemination professionals.
The findings from our research suggest these guidelines:
Begin with a theoretical approach that will guide your decision
making and utilize a strategic rather than a tactical approach. This
means that rather than starting with a tactic such as developing a
blog or a social networking site, communicators will want to begin
with goals and objectives for each targeted audience.
Conduct needs, features, and aperture research for each target
audience and narrow the segments as precisely as possible. Com-
municators should seek an approach that approximates one-to-
one or interpersonal communication for highest-priority goals and
audiences.
Be willing to abandon past practices and so-called best prac-
tices. Each campaign goal for each audience will require distinct
research-based strategies. What worked in the past will not nec-
essarily work for the current problem or opportunity.
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112 Health Communication in the New Media Landscape
Be medium agnostic. By that, we mean that communicators should
draw on the variety of tools available to them to create the most
effective and persuasive message and deliver it at the right time
to the right person. These tools could include direct mail, social
networks and Web sites, blogs, mobile devices, television, outdoor
media interpersonal approaches such as meetings and gatherings,
and word-of-mouth, viral, and experiential marketing.
Test and refi ne approaches for each target audience. The media
world today is constantly shifting as people use new options and
new technologies to meet their communication needs.
Just as a skilled physician draws on research and uses sophisticated
tests to accurately diagnose an individual’s condition, the health commu-
nicator must “diagnose” the needs, habits, behaviors, and preferences of
her target audiences. He or she then continues to monitor the effective-
ness of the campaign or program and make the appropriate adjustments
to achieve an optimum result. Through research, testing, strategic think-
ing, and evidence-based approaches, health communicators can achieve
the results they seek.
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PART
II
Health Communication
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Landscape
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6
THE DAY THE WORLD CHANGED
On May 24, 2001, the Public Broadcasting System aired a featured re-
port titled “Health on the Web” on its popular news show NewsHour
with Jim Lehrer. The feature began with a statistic, surprising to many at
the time, suggesting that in the previous year some 60 million Americans
had gone online looking for health information. In the feature, breast
cancer patient Pat Hodges summarized what her experience had been
when she looked on the Internet for information about her breast cancer
treatment.
The Internet gives you so much more. You can be as inquisitive [as you want]
as long as you’re awake. And there’s no one that judges you on the questions
that you ask or the searches that you do. I just went on to a regular search
engine and typed the words “breast cancer drug,” and I knew the name of
the drug, Femara. And I actually got 1,060 references. (Dentzer, 2001)
A New Turn in Health Care
Hodges’s experience captured the essence of a new turn in health care,
a turn that we are just beginning to understand but that will continue to
Enhancing Consumer Involvement
in Health Care
BRADFORD W. HESSE
120 Health Communication in the New Media Landscape
play out—for better or worse—in coming decades. Her statements are
telling, as they are emblematic of larger changes occurring in health care
that are worth noting. For example, Hodge expressed a sense of hope
at the abundance of medical information immediately available to con-
sumers. In the past, medical knowledge was seen primarily as the pur-
view of highly trained medical care providers. Because of the protected
nature of the knowledge, patients often had no choice but to assume a
passive role regarding their own health, usually waiting until a problem
emerged before submitting themselves to the will and expertise of highly
paid professionals (Taylor, Aspinwall, Costa, & VandenBos, 1996). In the
new media world, information about health—as well as almost any other
topic—has been made freely available to anyone with an Internet con-
nection and a desire to search. The Internet has brought about an atmo-
sphere of “disintermediation,” or an opportunity for consumers to bypass
the middleman and go directly to the source for information and services
delivered on demand (Crowston, Sawyer, Wigand, & Allbritton, 2000).
This shift in the availability of health information has precipitated a
change in the ways in which patients are approaching their own health
and health care (Hesse et al., 2005). As Hodges put it, when patients
go online, “there is no one that judges you on the questions you ask.”
Patients can be as proactive in seeking new knowledge in this new world
as they wish. Quite simply the barriers are down. With just a few key
strokes entered into a computer at any time of day or night, people can
enter into the conversation about their own health. They can be selec-
tive in their choice of treatments or can seek help on such pernicious
habits as smoking (Saul et al., 2007) at the exact moment at which they
reach a stage of readiness to change (Prochaska, Teherani, & Hauer,
2007; Weinstein, Lyon, Sandman, & Cuite, 1998).
This change from passivity to a proactive approach implies a sig-
nificant alteration in the way that researchers and policy makers should
think about health communication. Health communication, like all types
of service communication, is no longer a matter of “push” through one-
way media; it is increasingly becoming a matter of “pull” as consum-
ers go online in search of their own research for products and services
(Beckjord et al., 2007; Johnson, 1997; Napolli, 2001; Nelson et al., 2004).
The chief executive officer of Proctor & Gamble put it this way when
speaking about the new media era in 2006: “Consumers are more par-
ticipative and selective [than they have ever been before] and the trend
from push to pull is accelerating” (Creamer, 2006).
Chapter 6 Enhancing Consumer Involvement in Health Care 121
Finally, as Hodges’s experience in looking up the drug Femara illus-
trates, the information revolution is not without its challenges. In 2001,
Hodges’s search for information on the drug produced just over 1,000
hits—a daunting number, to be sure. In 2007, just 6 years later, the
same search would produce approximately two million hits, according
to indices posted on the popular search engine Google. The information
revolution is producing an information glut, what journalist David Shenk
(1997) called “data smog,” as consumers are inundated with more infor-
mation than they are able to process (Arora, Hesse, Rimer, Viswanath,
Clayman, & Croyle, 2007). Biomedical scientists often add to the prob-
lem inadvertently by releasing early, and often contradictory, findings
to the popular press prematurely (Woloshin & Schwartz, 2006). Staying
fully abreast of the scientific literature in medicine means keeping track
of the more than 12,000 newly referenced articles added to the National
Library of Medicine’s online bibliographic retrieval system weekly (U.S.
National Library of Medicine, 2007). It is no wonder that in a survey
conducted in 2003, an estimated 71.5% of the U.S. public felt that “there
are so many recommendations about preventing skin cancer that it’s hard
to know which ones to follow” (Niederdeppe & Levy, 2007).
PURPOSE OF THE CHAPTER
The purpose of this chapter will be to explore the potential for enhanc-
ing consumer involvement in health care within the context of a rapidly
changing new media environment. The focus will unabashedly be on
behavior—that is, on understanding how healthy behaviors can be sup-
ported in a way that will extend life and improve quality of living. In
the previous century, the greatest threats to public and personal health
were often associated with malnourishment and infectious disease. In
this century, the greatest threats in the United States are posed by an
aging population and the onset of avoidable chronic conditions (Bhat-
tacharya, Choudhry, & Lakdawalla, 2008). Understanding how to sup-
port preventive behavior in this new environment, it can be argued, will
be as important to the problem of extending longevity and improving
quality of life in the next century as was the development of safe water
treatments and vaccines in the last (Quam, Smith, & Yach, 2006; Strong,
Mathers, Epping-Jordan, & Beaglehole, 2006; World Health Organiza-
tion, 2006).
122 Health Communication in the New Media Landscape
CONSUMER BEHAVIOR IN THE NEW MEDIA
ENVIRONMENT
To understand how the new media environment can be optimized to
support changes in consumer behavior, it is worthwhile to examine how
and under what conditions the environment has evolved over the past
several decades. One of the seminal articulations of the power that
computer media can have in changing behavior can be found in a white
paper written by computer scientist Douglas Engelbart (1962) and his
colleagues in 1961. Titled “Augmenting Human Intellect: A Conceptual
Framework,” the paper borrowed heavily from multiple fields, including
communication theory, cognitive science, mathematics, human factors,
and computer engineering. Its main premise was borrowed from the
linguistic notion that human thought has co-evolved with the develop-
ment and sophistication of language (Whorf, 1956); that is, the more
sophisticated the system of symbolic interaction became, the greater the
capacity for intellectual advancement. Engelbart and his colleagues be-
lieved that information systems represent a type of structured system for
symbolic interaction. Engineered appropriately, these systems had the
potential to augment human thought and empower human behavior.
HUMAN FACTORS
For Engelbart (1962), the problem of designing a truly augmentative
environment for human thought was a human factors issue; that is, it
was a matter of optimizing the interface between the underlying sys-
tems architecture and the user’s own intellectual predilections through
evidence-based iterations of the system’s design. Perhaps best known
for his contributions to the design of the computer mouse, Engelbart
championed the cause of creating better and more productive inter-
faces between developing computer systems and their human users
(Bardini, 2000)—an area of research that came to be known as the field
of human–computer interaction. In his mind and in the minds of other
computer pioneers, the computer should not replace human thought or
action; rather it should augment it.
Shoshana Zuboff (1988), a social psychologist studying the ways in
which computer systems enhanced business productivity, put it this way.
The information revolution, she explained, was not about automating
human performance as machines did during the industrial revolution; it
Chapter 6 Enhancing Consumer Involvement in Health Care 123
was about informating human performance, using computing machines
to augment or add to human intellectual capacity. The distinction may
seem subtle, but it has had a big impact on the ways in which informatics
applications can be designed to support health. Early medical informat-
ics pioneers often asked “the wrong question” in system design (Hesse &
Shneiderman, 2007; Shneiderman, 2002). They tried to automate physi-
cian performance and knowledge through expert systems and artificial
intelligence. The more effective designers recognized that the patient’s
health was central; all designs should be brought to bear in improving
the experience that all patients have (Brailer, 2005).
Engelbart and his colleagues also recognized that the true power
of the new emerging information systems should not be limited to the
capacity of any one single computer but should expand to include the
broader view of collective capacity as users interacted with new knowl-
edge and with each other over computer-based communication net-
works. Thirty years later, in 1991, computer scientist Tim Berners-Lee
proposed a project that would bring the early computer pioneers’ ideas
to fruition. By combining the usability of a graphical user interface
environment with the connectivity offered by the Internet, Berners-
Lee was able to propose a truly collaborative environment for interac-
tion: an environment that would be easy to join and simple to navigate
(Berners-Lee & Fischetti, 1999). He referred to his proposed project
as the “World Wide Web.”
AN ERA OF UNFETTERED ACCESS TO INFORMATION
Undoubtedly, the World Wide Web has put a global wealth of human
knowledge and information within reach for contemporary consumers.
The growth of information on Web-based servers has literally exploded
from the mere megabytes (10 6 ) of data available when the Web was
first made available to the petabytes (10 15 ) of data accessible through
the millions of servers accessible in 2007 and beyond (National Science
Foundation, 2007). Penetration of the Web as a new communication
technology was rapid; while a small percentage of American citizens
were online in 1993, almost 75% of adults were estimated to be online
in 2006 (Pew Charitable Trust, 2007). The information revolution ush-
ered in by the World Wide Web heralded a new era in communication
research, one in which the information stores of a global community
can be made available on demand to consumers (Viswanath, 2005).
124 Health Communication in the New Media Landscape
It created a tectonic shift in the ways in which health communication
researchers consider supporting the health of the public (Hesse, 2005;
Hesse et al., 2005).
Moreover, the communication revolution precipitated by the Web
did not just bring the power of information to individuals; it expanded
the reach and capacity of social networks. Computer-mediated com-
munications allowed individuals to interact with each other dyadically
(one-to-one) and with whole groups (one-to-many), it let preexisting
groups communicate with each other (many-to-many), and it let new
relationships emerge in virtual rather than physical space (Kiesler,
1997; Kiesler & Sproull, 1987; Sproull & Kiesler, 1991). The me-
dium provided newer, quicker ways for people to find answers to ques-
tions (either through search engines or by querying online discussion
groups), it connected people to services and information about ser-
vices, it offered support for decision making and self-management, and
it gave people remote access to powerful new computer systems. In
general, virtual environments allowed users to overcome boundaries
traditionally imposed by place (Stokols, Montero, Bechtel, & Church-
man, 2002) and temporality (Hesse, Werner, & Altman, 1988). It al-
lowed users to benefit by interacting with data, resources, and people
locally and globally, and it bridged the gap between real-time (synchro-
nous) and delayed-time (asynchronous) communication.
Transformed Context for Consumer Behavior
These early historical roots of new media environments lie at the foun-
dation of some of the most significant economic transformations in both
local and global economies over the past two decades (T. L. Friedman,
2007). They have altered the very context in which work, health, and
consumer behavior should be considered (Hesse & Grantham, 1991).
One of the first broad sectors of the economy to grapple with change
from the new computing technologies was the financial sector. Because
the exchange of monetary information is so vital to what financial insti-
tutions do, the financial sector pioneered some of the first real accom-
plishments in enabling standards for electronic data interchange. Once
data could be transferred in reliable ways, it did not take long for busi-
ness managers to consider ways of adapting the electronic data inter-
change infrastructures for direct use by the public. The automatic teller
machine was the first consumer adaptation designed to put the ability to
manipulate personal funds directly into the hands of customers. Rather
Chapter 6 Enhancing Consumer Involvement in Health Care 125
than having to wait in line for small deposits, transfers, and withdrawals,
consumers could manage many of these transactions at their own pace
and in their own time. The bank would win by attracting more customers
and reserving personnel time for more challenging financial problems
(Grantham & Nichols, 1993).
Other industries have undergone similar transformations. For
example, in the airline industry, American Airlines debuted its Semi-
Automated Business Research Environment (SABRE) system as an
experimental technology for coordinating seat assignments, reserva-
tions, and price offerings in 1960. Although the pioneering com-
puter system was originally developed to serve reservations specialists
at American Airlines, the company began selling access to independent
travel agents in 1976. In 1996, at the beginning of the dot-com boom, a
subsidiary of SABRE Holdings called Travelocity was created with the
express purpose of opening access to consumers. Today, the ubiquity
of Travelocity and other online travel services has provoked an industry-
wide change in airline business practice to cope with the influx of
price-conscious consumers going online for best value (Grantham &
Carr, 2002).
Transformations in Health Care
So, the question remains: if we can achieve such monumental change in
empowering consumers in wealth care, why can’t we achieve the same
successes in health care ? The health care industry has been notoriously
slow to adapt the kinds of broad-scale changes in its use of information
technology that would improve its quality of direct service to patients.
Reasons for the disconnect are multifaceted, ranging from the complex
set of incentives and disincentives woven into the fabric of insurance-
provider relationships to an “illness care” system that has been histori-
cally oriented toward reacting to symptoms once they emerge (Brailer,
2005). Nevertheless, conditions are changing. With aging populations
in many large developed countries, it is untenable to think of an illness-
oriented and disconnected health system as being economically viable
in the decades to come (Cayton, 2006). National health directors in the
United States and Europe are urging their governments to adopt a new
approach to health care, one that would take preemptive action to stave
off these health care costs by encouraging the public to be proactive in
its choice of healthy lifestyles and participative in its management of
personal care.
126 Health Communication in the New Media Landscape
In testimony to Congress, the director of the U.S. National Institutes
of Health suggested that medical research must undergo a transformation
to enable substantive progress against the complex, multifaceted health
problems confronting the nation at the beginning of the 21st century.
The science must move from being reactive, imprecise, and ultimately
expensive in terms of lives and money to being predictive, personalized,
preemptive, and ultimately cost effective by intervening in people’s lives
early before tissue damage occurs and function is lost (Culliton, 2006).
Health information technology must play a key role in harnessing the
power of a more personalized, preemptive health care system for con-
sumers (Hesse, 2005). To this end, the secretary for the U.S. Depart-
ment of Health and Human Services declared that it will be necessary to
create an electronic infrastructure based on transportable, interoperable
electronic medical records in order to achieve progress against chronic
disease in the 21st century. The president of the United States echoed
the secretary’s sense of priority in two State of the Union addresses and
upped the ante by declaring a national goal of connecting the majority of
Americans to electronic medical records by 2014 (Brailer, 2005).
All these changes are creating a new environment for consumer
involvement in health care. As will be explained in this chapter, the time
is ripe to sculpt this environment in ways that will improve health and
extend life. It is time to think proactively about how to embed the ben-
efits this new technology can offer into the fabric of daily living.
THE ACTIVATED PATIENT
In an article published in the journal Patient Education and Counselling,
Harry Cayton (2006), national director for patients and the public in the
United Kingdom, mentioned some of the changes that will be occurring
in the United Kingdom and other countries in the area of health care. As
he explained, economic analyses show that current trajectories in health
care expenditures are not sustainable in the long term. The only way to
stave off financial crisis is to reduce demand while improving supply.
The way for that to happen, he suggested, is to create an environment in
which patients and physicians create good health together.
In this new environment, the use of new technologies to answer day-
to-day questions and to reduce administrative workload would be high.
Members of the public would become engaged in managing their own
health in proactive ways, taking prevention seriously, and staying on track
Chapter 6 Enhancing Consumer Involvement in Health Care 127
for suggested checkups and routine screenings. When they do need the
assistance of the health care system, they would demand high-quality
care and insist that components of the system work together to support
positive health outcomes. The result would be longer life expectancies,
with more rewarding and productive years per person, and significant
cost savings for delivery of care (Cayton, 2006).
Is the Public Ready for Active Involvement?
Future predictions notwithstanding, a big question remains as to
whether the public is ready to make such a significant transition. To
monitor changes in the ways in which Americans utilize health informa-
tion, the U.S. National Cancer Institute launched the Health Information
National Trends Survey (HINTS) in 2001. HINTS is a biennial survey
that uses a nationally representative sample of adults ages 18 and older.
Random digit dial telephone interviews were used for the first HINTS
data collection in 2003, a second administration used random digit dial
plus Web surveys in 2005; and a third administration used random digit
dial plus mail surveys (to account for the increase in cell phone–only
households) in 2007 (Rutten, Moser, Beckjord, Hesse, & Croyle, 2007).
In 2003, the survey asked respondents to imagine they had a strong
need to get information about cancer and then to indicate where they
would go first to obtain information. An estimated 49% of the U.S. pop-
ulation said they would go to their health care providers, while an esti-
mated 33.2% said they would go to the Internet (percentages for other
options were negligible). In the same survey, interviewers asked respon-
dents if they had ever had an occasion to look for information about
cancer from any source. An estimated 45% of the population said they
had. Interviewers asked respondents who answered in the affirmative to
recall the most recent time they had looked for information about cancer
from any source, and to indicate what source they had gone to first. In
this case, the order of responses was reversed. An estimated 47% of the
information-seeking group indicated that they had gone to the Internet
first, and only 23% indicated that they had gone to their health care pro-
viders (Hesse et al., 2005).
To understand further how Americans were using the Internet
for health information, the survey asked respondents if they had ever
gone online to access the Internet or World Wide Web or to send and
receive e-mail. For those who reported being online, the survey then
asked respondents whether or not they had engaged in a number of
128 Health Communication in the New Media Landscape
health-related activities in the previous 12 months. Figure 6.1 shows a
comparison from 2003 to 2005 of these health-related activities for the
online populations identified through each survey. The first two sets of
bars show general increases in the percentages of online Americans look-
ing for health information either for themselves or for others. The third
and fifth sets show small increases in the percentages purchasing medi-
cine online and in e-mailing their physicians, respectively. The fourth set,
showing the percentage using online support services, remained stable
(Beckjord et al., 2007; Rutten et al., 2007).
Health communication is not just about exposure to information;
it is about attention and trust (Hesse et al., 2005; Institute of Medi-
cine, 2001; Kreps & Thornton, 1992). To understand how the new mix
of media channels was influencing the public’s confidence in health
information sources, HINTS interviewers asked respondents to indi-
cate how much they would trust information about cancer that they
received from their doctors, families, newspapers, radio, television, and
the Internet. Figure 6.2 offers population estimates for the percentage
of adult Americans who feel a lot of trust for sources in each of these
categories. For health information, the public had the greatest trust in
Figure 6.1 Estimated Percentages of the U.S. Adult (18+) Population Engaged in
Health-Related Activities Online From the 2003–2005. Administrations of the Health
Information National Trends Survey.
Chapter 6 Enhancing Consumer Involvement in Health Care 129
physicians, a trend that grew from 2005 to 2006. Trust in other sources,
at least for health or medical information, was significantly lower. There
appeared to be a slight erosion of trust for the Internet as a source (Rut-
ten et al., 2007).
Collectively, these data suggest that the majority of users are going
online to look for health-related information either for themselves or
others. Involvement in other online health-related activities, such as
buying medication or communicating with physicians, currently lags
behind general information seeking, but those areas are continuing to
grow. Support for these other online activities will likely evolve as the
infrastructure matures. In spite of the profusion of health information
on the Web, these data suggest that the need for qualified medical per-
sonnel will not go away. If anything, consumers’ reliance on the train-
ing and experience of qualified medical teams to answer questions from
materials otherwise found online will become greater (Beckjord et al.,
2007; Mazur, 2003). Enhancing consumer involvement means focus-
ing first on the perceptions and needs of the user, and then supplying
consumers with integrated solutions that augment the physician–patient
relationship.
Figure 6.2 Estimated Percentages of the U.S. Adult (18+) Population Indicating that
they would Trust Health Information from Each of Seven Sources “a Lot.”
130 Health Communication in the New Media Landscape
Focus on Users
The HINTS data suggest that people are indeed taking advantage of this
dramatic shift in the media environment to improve their own health
care experiences. The question this chapter asks is: How can new media
planners catch up to people’s needs? How can this connective, augmen-
tative information environment be leveraged in ways that will enhance,
not detract from, consumers’ desires to lead optimally healthy lives and
to protect the health of their loved ones (Fox, 2007; Fox & Rainie, 2002)?
To find an answer to that question, it is worthwhile to look into the psy-
chological literature on the role of motivation in human performance.
The study of human motivation has a long history in the psychologi-
cal sciences, from early quantification of drive or tissue need to stud-
ies of reinforcement in behavior and contemporary theories on social
influence and cognition. After years of studying motivational issues
among students and employees, social psychologists Edward Deci and
Richard Ryan (2002) observed that most people are driven by a need to
influence the outcomes that affect their lives. That is, humans seek self-
determination in thought and action. When the environment reinforces
self-determination, people become effective and thrive. When the envi-
ronment takes away that goal, they can become listless and depressed
(Deci & Vansteenkiste, 2004; Seligman, Rashid, & Parks, 2006).
Using factor analytic and structural equation modeling approaches,
Deci and Ryan (2000) identified three universal needs that appear to
influence the cultivation of self-determined behavior. The first was a
need for autonomy, or the need to perceive actions as stemming from
internal motivations, not from external sources. The second motivational
need they observed was a need for competency, or the desire we all have
to learn from the environment and gain mastery over skills and talents.
The third was a need for relatedness, of the social need to gain a sense of
respect and belonging from valued others.
Supporting these universal needs, Deci and Ryan argued, lies at the
heart of creating an environment that will lead to personal empower-
ment. It is instructive to take each of these needs and examine the con-
tributions that the new media can offer each in supporting a shift toward
consumer involvement.
A Need for Autonomy
In many respects, the ethos of the information revolution has emerged
from a collective desire to achieve autonomy in behavior and thought
Chapter 6 Enhancing Consumer Involvement in Health Care 131
(Markoff, 2005). At its heart, the personal computer revolution has been
a movement aimed at wresting power away from centralized gatekeep-
ers, and then putting that power back into the hands of individuals for
personal action (Toffler, 1990; Toffler & Toffler, 1993). It is easy to see
why individuals are flocking to the Internet as a way of regaining per-
sonal autonomy in their own personal health issues. Consider what hap-
pens under the traditional medical model of health care.
In the traditional model, patients are typically inclined to wait until
they got sick—that is, when symptoms appear late in the disease cycle
and function is at threat or lost—before contacting their health care pro-
vider. Once they have a need, they call an overburdened office staff to
put themselves on a waiting list to see a physician. The first appointment
could not be for days or weeks, during which time the underlying dis-
ease pathology might very well progress. To enter the system, the patient
must provide proof of coverage, fill out medical history forms, describe
medications from memory, and then wait in a waiting room filled with
other patients while reading popular news or gossip magazines to pass
the time. In the examination room, a nurse might take routine—but
nonspecific—measurements (weight, blood pressure), after which the
physician and patient must condense weeks’ worth of pathology and
review into a short 15-minute exchange. The patient is given a diagnosis
or put on a treatment plan that may require visits to other components
of the health care system or referrals to specialists, or is given a prescrip-
tion for a pharmaceutical product with three- or four-word instructions
on the pill bottle’s label, and perhaps accompanied by an indecipherable
insert designed to meet legal requirements rather than to instruct.
Each of these interactions appears to be focused on requirements
exogenous to the patient’s interest and is part of the “thousand little
assaults” on personal autonomy that plagues the modern consumer on a
daily basis (Zuboff & Maxmin, 2002). What is worse is that the first gen-
eration of information technology applications did not solve the problem
but in many ways made it worse. Early dot-com companies myopically
looked to the single Web visit (much as the traditional health care sys-
tem looked only to the single office visit) as the sole point of interaction.
Designers then set out to extract as much value from that single trans-
action as possible. A consumer visiting a site would be forced down the
same rigid set of marketing paths, with little support for self-determined
needs, while pop-up ads took time away from the consumer’s goal. Often
no other way of contacting the organization (telephone numbers, mail-
ing addresses) was provided, and when a telephone number was given, a
set of complex telephonic menus (“Press ‘1’ if you have a question about
132 Health Communication in the New Media Landscape
billing”) took even more time away from the time devoted to meeting
the customer’s needs.
Today, with greater business acumen, the more successful com-
panies are changing that (O’Reilly, 2005). These companies look to
developing long-term relationships with and a sense of loyalty among
their customers. When technology is used, it is used in a way that is
transparent and that reinforces the organization’s core commitment to
providing customers with responsive, ongoing support (Collins, 2001).
Consider companies such as UPS or FedEx. These are some of the most
advanced users of information technology in the current global mar-
ket, yet customers do not think of them as technology companies at all
(T. L. Friedman, 2007). All their technology systems are centered on
customer fulfillment, on moving and tracking parcels from point to point
as efficiently and expediently as possible. A visit to their Web sites reveals
a spate of consumer tools, all set up to give customers more power in
tracking their parcels, identifying problems, and making new requests
quickly and efficiently. Or consider Southwest Airlines’ award-winning
Web site. This site makes it easy for consumers to identify bargains for
travel, make new reservations, and even change reservations as personal
priorities change.
Now consider how a new media environment, one that is built on a
foundation of interoperable health records, can be marshaled to enhance
patient autonomy. Following are just a few of the promising innovations
that are currently under development.
Self-help tools. One way of putting control back into the hands
of consumers is to provide tools for healthy living. For example,
it has been estimated that in the 20th century some 100 million
people’s lives could have been saved if they had not been exposed
to tobacco (President’s Cancer Panel, 2007). Yet many who are
willing to quit fi nd it diffi cult and often need the help of a pre-
scribed smoking cessation program combining personal counsel-
ing with the use of a graduated nicotine patch. The therapeutic
side of these programs can be expensive and can be off-putting
to patients who have busy lives and must fi nd time to participate
in a smokers’ support group or visit with a personal counselor. As
part of its Centers of Excellence in Cancer Communication pro-
gram, the National Cancer Institute has been experimenting with
techniques for making the benefi ts of a personally tailored smok-
ing cessation program available to patients through the Internet
■
Chapter 6 Enhancing Consumer Involvement in Health Care 133
24 hours a day, 7 days a week. Because these programs are com-
puter-based, they can be deployed widely to those who need it
for just a fraction of the cost of an expensive counseling program
(Saul et al., 2007; Strecher, 2007). Online programs for weight
management and exercise are being introduced through the Web,
cell phones, personal digital assistants, and other communication
devices to help individuals live healthier lives with the behavioral
aids that correspond to real-life demands (Pew Research Center,
2005).
Personal health records. One of the reasons why the secretary
for the Department of Health and Human Services has identifi ed
interoperable health records as a priority in the current decade is
so that a foundation for consumer empowerment can be created.
Just as interoperable banking records give customers control over
their own fi nances, interoperable health records can give patients
control over their own health records. This simple notion that
patients should have access to and control over their own health
information represents a paradigmatic shift away from the tradi-
tional medical model. Behavioral supports that can be put in place
with a personal health record include structures that make it easy
for patients to set up appointments in a way that is convenient
to their schedules; provide age-sensitive reminders for screening,
inoculations, and checkups; offer tools for monitoring health sta-
tus in response to treatment or preventive life changes; improve
quality of care by allowing users to track progress of lab results,
referrals, and other points of handoff; and offer patients access
to state-of-the art health information as needed so that they can
make life decisions for themselves and loved ones (Burrington-
Brown & Friedman, 2005).
Health portals. It has been argued that information is power, and
in the world of health care, accurate medical information means
the difference between relying on well-meaning home remedies
and using the power of medical science to extend life and live
strong. To meet the needs of a surging interest in health informa-
tion, Web portals have begun to emerge that offer health advice
on everything from anthrax to SARS. The trusted sites can be
comprehensive one-stop shops for all the information a patient
wishes to digest before or after visiting the doctor’s offi ce. The
availability of current evidence-based health information 24 hours
a day, 7 days a week, can make a real-time difference in the “hurry
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134 Health Communication in the New Media Landscape
up and wait” world of medical care (Fox & Rainie, 2002). There
is, however, one caveat in the availability of real-time health in-
formation within the unfettered environs of the Web (Kemper
& Mettler, 2002). Undirected searches could lead consumers to
sites that are neither usable nor trustworthy (Berland et al., 2001).
Consumers and media watchdog groups should remain vigilant
as to the authenticity, credibility, and accuracy of the information
they uncover on the Web (Eng & Gustafson, 1999; Eng, Maxfi eld,
Patrick, Deering, Ratzan, & Gustafson, 1998).
Connective journalism. One of the perennial problems in health
communication lies in the way in which stories are selected by edi-
tors for publication (Royal Institution of Great Britain, 2001). Sto-
ries that appear to be new or controversial have a greater chance
of being published than stories that appear to be old or common
knowledge; this situation creates an environment of misrepresen-
tation for health stories (S. M. Friedman, Dunwoody, & Rogers,
1999). This creates diffi culties for the public, as news media gravi-
tate to those fi ndings from research laboratories that are prelimi-
nary or anomalous in nature and ignore recommendations that are
supported by consensus or that represent standards of care (Wo-
loshin & Schwartz, 2006). In one content analysis of news stories,
there was an inverse relationship between the number of stories
on a particular health topic and the importance of information
about that topic for healthy living. The stories about rare condi-
tions and preliminary fi ndings were numerous, while the stories
about evidence-supported prevention behaviors (diet, exercise,
nutrition, early detection) were infrequent (Frost, Frank, & Mai-
bach, 1997). New media sites can allow newspapers to go beyond the
headlines and to link readers to the information and resources
they need for healthy living. In fact, some of the online sites are
themselves becoming trusted health portals with embedded links
from the stories that take the reader back to national public health
recommendations. Locally relevant sites can link readers to com-
munity resources or offer easy applications to government assis-
tance programs for crucial medical services.
Ubiquitous health care. In the fi nancial industry, customers were
given self-directed access to their money any time of the week
through automatic teller machines. In the travel industry, con-
sumers can receive travel and weather updates through PDAs
or cell phones and they can check in and print their boarding
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Chapter 6 Enhancing Consumer Involvement in Health Care 135
passes from home before going to the airport or at self-standing
kiosks in the lobbies of most airports. A new trend enabled by
an infrastructure based on connective health information tech-
nology will be the ability to offer urgent care services or phar-
maceutical products ubiquitously in consumer-friendly environ-
ments. As these services get “commoditized,” one hope is that
the marketplace will force providers to make their services more
compatible with consumer needs and lifestyle choices (Crounse,
2007). For example, a well-known retail outlet has recently been
credited with fi nally “reinventing” the pill bottle to make it safer
and easier for consumers across all levels of health literacy to use
(Bernard, 2005; “A Better Pill Bottle,” 2005; Davis et al., 2006;
Parker, Baker, Williams, & Nurss, 1995). As with health portals,
policy makers and the public should pay close attention to these
changes. The quality and accreditation procedures should be in
place to assure customers that the care being given adheres to
accepted standards.
Need for Competency
Another long-standing area of emphasis in thinking about consumer in-
volvement in health care concerns the need people have to acquire and
improve essential life skills. It is one of the reasons why the For Dummies
book series has been so popular among consumers, and why how-to sites
have found a place on the World Wide Web. The problem has been that
once most people complete formal schooling, they do not have access
to the kinds of training environments that can help them gain control
over their own health care. This is especially true for patients, who must
move from the comfortable role of a well person into the unfamiliar role
of a sick person. In fact, the prevailing culture has encouraged patients
to assume a role of passivity and subservience when interacting with the
health system. “Good patients” are those who appear passive and com-
pliant; “bad patients” are those who appear assertive and questioning
(Taylor et al., 1996).
It is these stereotypes, from a human factors perspective, that need
to change. The proactive patient is essential for helping to solve the
health care problems that will confront the United States in the next
several decades (Atienza et al., 2007; Institute of Medicine, 2001; Wag-
ner, 2004). This is not to say that patients must be up to the task entirely
on their own. Rest is essential to the healing process, and when sick,
136 Health Communication in the New Media Landscape
people do not always make the best judgments. It is equally important to
consider the skills of family members and caregivers as partners invested
in the patient’s health. Patients can, in turn, depend on their caregivers
to be assertive on their behalf, to ask questions, and to learn what to do
with them (Taylor et al., 1996).
There are many ways in which new media can be used to support
competency in healthy living and in dealing with the health care systems.
The following areas merit special consideration:
Functional health literacy. The Institute of Medicine declared
the problem of health illiteracy to be one of the most devastating
challenges to public health in existence today (Nielsen-Bohlman
& Institute of Medicine Committee on Health Literacy, 2004).
One aspect of the health literacy problem is having the knowl-
edge to act appropriately when it comes to preserving health,
an aspect referred to as “functional health literacy.” Fortunately,
problems of functional health literacy can be addressed through
better design of the information environment. For example, a re-
cent review by the Cochrane Collaboration identifi ed non-adher-
ence to treatment regimens as a serious medical problem (Haynes
et al., 2005). Adherence rates for prescription medicines in the
United States typically hover around 50%, and lack of adherence
has been identifi ed as the principal cause of death in up to a third
of cases in a recent study of geriatric patients (Baker, Wolf, Fe-
inglass, Thompson, Gazmararian, & Huang 2007). Solutions are
possible with the aid of information technology (Paasche-Orlow,
Schillinger, Greene, & Wagner, 2006). Instructional systems can
easily be made available through multimedia (Wofford, Smith,
& Miller, 2005), reminder systems can be put in place through
monitoring and tracking systems (Thomas et al., 2007), social
networks can be mobilized to encourage compliance and pro-
vide vigilance as part of their social support (Magai, Consedine,
Neugut, & Hershman, 2007), and so on.
Information Prescriptions. Corporations have long recognized the
importance of “just in time training” as a tool for building em-
ployee competencies. Health educators have argued that it is time
to consider ways of applying the same principles to patients. In
a book titled Information Therapy , Kemper and his colleagues
argued that physicians should be remunerated for giving patients
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Chapter 6 Enhancing Consumer Involvement in Health Care 137
prescriptions to go to a sanctioned Web site and learn about their
conditions between visits (Kemper & Mettler, 2002). The infor-
mation prescription can go a long way in helping patients build
their knowledge base relevant to their diagnosis, treatment, and
side effects, thus enabling them to make more informed decisions
and be more participative in their own care (D’Alessandro, Kreiter,
Kinzer, & Peterson, 2004). New media tutorials can offer peda-
gogical advantages over simple brochures by providing a more
in-depth review of processes along with personalized layers of ac-
cess for novices as well as advanced learners. The sites can also
be shared easily with caregivers and loved ones, no matter where
they live. Offering professional recommendations for vetted and
credible information sources will take the guesswork out of decid-
ing what information on the Web can be trusted. It can also make
recommendations equally transparent to patients and providers,
as illustrated by the Cancer.gov Web site hosted by the National
Cancer Institute (see Figure 6.3).
Skill augmentation. At their best, information technology solutions
can help augment an individual’s own knowledge and experience.
For example, grammar and spell checking in word- processing
programs can offer real-time support for poor spellers, real-time
car navigation systems can help travelers cope with unfamiliar
street systems, personal fi nancial software can make up for a
person’s lack of familiarity with complex tax laws, and powerful
new graphics programs are giving consumers the power to create
professional quality video, photographs, and pictures (Shneider-
man, 2002). An exciting area of development in the next genera-
tion of consumer health applications will be in thinking through
ways of helping patients develop proactive solutions to life chal-
lenges. An age-sensitive health record can help remind patients
when screening tests are recommended, even if those recommen-
dations seem to have been changing over time. Exercise monitors
and meal planners can give dieters real-time advice and support,
while smoking cessation aids can help inoculate those in the de-
veloping world against the threat of exploitation by international
tobacco sales. Personal management programs can be extended
beyond simple task management and fi nancial record-keeping
functions to include mechanisms for developing a personalized
approach to managing risk and building health.
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138 Health Communication in the New Media Landscape
Relatedness
The third ubiquitous need that most people express is a need for relat-
edness. Humans, as social organisms, have a strong need to cultivate
and maintain social relationships with others. This is especially the case
when it comes to health. When people fall ill, they look to others for
expressions of emotional support as a buffer against the stress they feel
in coping with health-threatening situations (Taylor, Falke, Shoptaw, &
Lichtman, 1986). They also look to others for clarification for how they
should be feeling under atypical circumstances and for what to do to
cope (Croyle & Hunt, 1991). They use family members and friends as
sounding boards on when to interact with the health care system, and
where to go to seek help. These caregivers provide instrumental help
as well by taking their loved ones to the hospital or helping them make
some of the vital decisions that influence their care (Taylor et al., 1996).
Once connected to the health care system, patients and their loved
ones look to their medical teams to help them manage their diagnosis and
the course of their treatment. A comprehensive literature review funded
by the National Cancer Institute has suggested that there are six fun-
damental communication needs that must be met by a health care sys-
tem in order to support a patient’s health care needs (Epstein & Street,
Figure 6.3 Example of Web Content From a National Government Agency, Designed
to Support Consumer Needs While Transparently Supporting Health Care Practitioners
(Oncologists) and Scientists .
Chapter 6 Enhancing Consumer Involvement in Health Care 139
2007). These are exchanging information vital to shared management of
the health condition, eliciting and validating emotions, managing uncer-
tainty, making decisions, navigating the health care system, and building
a sense of trust and continuity in the provider–patient relationship.
One of the most powerful aspects of the Internet as a new medium
is not just its ability to link information, but its ability to support con-
nections between people. Not long after the first data packet was sent
between machines over early electronic networks, people began using
the networks to communicate socially between each other. In the 1980s
and 1990s e-mail, discussion groups, chat rooms, instant messaging, and
other forms of socially connecting technologies escalated as some of the
most important uses of network technology. In the current decade, the
so-called Web 2.0 applications have elevated support for social interac-
tions and sharing to new levels. It is easy to envision a new media envi-
ronment in which these elements are optimized in order to enhance
prospects for a healthier, longer, and more fulfilling life. Some examples
to watch for are:
Health advocacy groups. In the political arena, the connective ca-
pacity of the Internet allows people to organize online and bypass
overt attempts to control communication through propaganda or
suppression. Some observers credit the transparent qualities of
communication on the Internet with fostering a peaceful buffer to
the potentially dangerous situation that could have occurred dur-
ing the political dissolution of the Soviet Union in 1989–1990. In
the same way, many observers have suggested that online advocacy
groups will play an active role in exerting pressure on traditional
power structures of medicine, insurance, and regulation. These
groups will demand investment of political and fi nancial capital
into attempts to solve some of the major health issues of the new
century. They will contribute funding and volunteer their time to
encourage political attention to health issues but will be demanding
of results from the research and practice communities to improve
quality and length of life. Health communication specialists can
take advantage of the trend by encouraging biomedical scientists
to “opt in” to the conversation, communicating their results in ways
that will support understanding and patients’ goals for healthy de-
cision making. Health care practitioners and medical systems can
take advantage of the trend by refocusing their services to fi t within
the values expressed by the burgeoning health communities.
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140 Health Communication in the New Media Landscape
Networks of care. With an electronic health information infra-
structure in place, new media applications can be developed to
bolster the supportive interpersonal connections needed by pa-
tients and the public to prevent, preempt, and control the effects
of disease before function is lost. Communication engineers are
creating a new generation of telemedicine applications that will
upload medical data from portable devices and even home sen-
sors to an electronic repository for monitoring (Wilson, 1999).
Distributed communication technologies will allow the patient to
access medical records and review medical progress in partner-
ship with a health care team. On the medical system side, these
communities of care can be extended to include coordinated input
from primary care physicians, specialty physicians, advice nurses,
laboratory specialists, case managers, urgent care facilities, and
even employer-based health management programs. For patients,
giving permission for others to view some of their online medical
information will allow family members, caregivers, and signifi cant
others to support patients’ health while away from the hospital—a
godsend for adult children dealing with the challenges of an aging
parent wishing to remain active at home while confronting de-
clines in function and health. “Care Pages,” an application gaining
popularity as a way to keep concerned friends and family apprised
of the progress of someone struggling with a serious disease, can
help extend the advantages of emotional connectedness in ways
that are not intrusive to the patient’s own need for rest or recu-
peration (Garcia-Lizana & Sarria-Santamera, 2007).
Shared communities of knowledge. Another phenomenon that is
gaining momentum is the development of self-organizing commu-
nities of knowledge. Electronic publishing pioneer Tim O’Reilly
suggested that after the dot-com bubble burst, the Web compa-
nies that survived learned from the mistakes of their predecessors.
The second generation, or Web 2.0, is characterized by architec-
tures that promote user participation, that harness the power of
collective intelligence, and that use data as the next “Intel inside.”
Physician-entrepreneur Matthew Holt, who convened the fi rst
“Health 2.0” conference on user-generated content in 2007, sug-
gested that these new patterns of Web-enabled interaction are
catalyzing change in the health care arena. In the new health care
market, he explained, patients are coming to understand that they
need to work as partners with their health care providers. “You
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Chapter 6 Enhancing Consumer Involvement in Health Care 141
could almost argue that healthcare is being produced by patients
to some extent,” he speculated (Conn, 2007).
CAVEATS AND RESEARCH OPPORTUNITIES
When Engelbart and his colleagues laid the foundation for a new tech-
nological infrastructure back in 1961, what they were really doing was
outlining the steps for evolutionary change in human thinking. They re-
ferred to the process as “bootstrapping,” literally the process by which
a whole system can evolve to new levels by “picking itself up by the
bootstraps” (Bardini, 2000). Admittedly, the seeds of change planted in
those early years took a long time to germinate and grow. They are flour-
ishing now, though, and the implications of change are widespread and
global. Some media experts speculate that there will be more change
precipitated by advances in the new media environment within the next
5 years than there has been in overall communication environment over
the previous 50 (Brown, 2006).
Taking Health Communication Research
to the Next Level
The challenge for a new generation of health communications research-
ers is to understand how to harness this transformation in productive
ways that are beneficial to society, to move individual and public health
to the next level. It took millennia for the practice of medicine to evolve
from folk wisdom to evidence-based treatment and prevention. As so-
bering as it may sound, the first randomized controlled trial in medicine
was not published until 1952 (Daniels & Hill, 1952). Today, the National
Library of Medicine adds thousands of empirically based medical stud-
ies to its online holdings each week (U.S. National Library of Medicine,
2007) with advances in medical technology leading to real, observable
differences in people’s lives. From 1900 to 2000, average life expectancy
at birth rose from a mere 49 years to almost 80 years due in no small part
to the translation of biomedical science into public health outreach and
policy (Centers for Disease Control and Prevention, 1999).
Health systems researchers caution that the advances accrued during
an era of industrial age medicine may have reached their limit (Cayton,
2006). Along with individual successes in medical treatment has come
an epidemic of medical errors that exceeds threats from breast cancer,
142 Health Communication in the New Media Landscape
AIDS, or automobile accidents (Institute of Medicine, 2001). As one
observer put it, “medicine used to be simple, ineffective, and relatively
safe; now it is complex, effective, and potentially dangerous” (Chantler,
1999). Moreover, the sheer magnitude of new studies published each
year has created a type of “data smog” clouding the understanding of the
public, policy makers, and practitioners (Shenk, 1997). Scientists recog-
nize that in the absence of better collaboration, individually based labo-
ratories appear to be reinventing the same wheel simultaneously without
moving the knowledge base on complex problems forward. Inefficien-
cies in industrial age translation mechanisms have created a backlog in
getting the benefits of biomedical research out of the laboratory and
into practice. By some counts, it currently takes an average of 17 years to
move the benefits of medical science from bench to bedside (Westfall,
Mold, & Fagnan, 2007).
With the recent mapping of the three billion (plus) base pairs
comprising the human genome—an accomplishment made possible
by advances in connective information technology—the potential for
tackling previously insurmountable problems such as cancer, aging,
and the unequal burden of disease is great. Those advances can only
come if we bootstrap improvements in the ways in which we conduct
biomedical science research, and the ways in which we move the ben-
efits of that science into improved health at individual and population
levels.
Collaboration Is the Key
Collaboration lies at the heart of this bootstrapped transformation.
What is new about the evolution of new media technologies in the era
of Web 2.0 is the development of highly successful “architectures for
participation.” These architectures rely on data in the way that indus-
trialized medicine relied on intuition and expertise to enable a new
era of evidence-based, participative health care. Each member of the
participative enterprise will play a crucial role. Patients will bring with
them an intuitive understanding of their own physiologies and medi-
cal histories and will be motivated by vested self-interest in protecting
their own health as well as the welfare of their loved ones. Medical pro-
viders will bring a professional understanding of symptoms, processes,
and treatments interpreted through the lens of medical science. Pay-
ers will continue to maintain their role in diffusing risk across popu-
lations, while insisting on systemic changes that reduce overall costs
Chapter 6 Enhancing Consumer Involvement in Health Care 143
through approaches that are preventive, preemptive, and personalized.
Governments and advocacy groups will participate transparently to en-
sure that benefits from the new transformation reach all parts of society
equitably.
The time is right for new media researchers to step into the fray to
influence the development of these architectures. This, too, must be a
participative enterprise. Computer scientists are essential to the devel-
opment of the computational architectures necessary to translate data
into informed decision making. Biomedical scientists form the backbone
of an enterprise that is doubling life expectancy, while communication
scientists must focus on ways of enabling a push-pull architecture for par-
ticipative discussion. Cognitive scientists must take on the role of reduc-
ing cognitive burden by developing interfaces that are user friendly and
facilitative, while social psychologists are needed to improve group pro-
cesses in team science and participative medicine. Health economists
can evaluate overall trends in the search for returns on investment, while
human factors specialists look for systemic changes to reduce error.
In all these collaborations, evidence must trump speculation and data
must serve as the lingua franca for a new transdisciplinary science
(Abrams, 2006).
CONCLUSION
The theme in this chapter is that advances in information technology
have enabled an era of massive change in the ways the global commu-
nity organizes and communicates. For health care, that world changed
the day patients began looking to new media as a way of becoming more
actively involved in the stewardship of their own care. The course of that
change is still undetermined. The technologies themselves are benign; it
is what the scientists, practitioners, governments, and the public do with
the technology that will be important. Left unattended, the benefits of
the new media may easily be squandered in a cacophony of commercial
self-interests, and public health may be abandoned to the chicanery of
folk wisdom specialists and snake oil salesmen. Riveted on a new, rigor-
ous communication science, the new system can be used to improve the
reach, effectiveness, and efficiency of 21st-century medicine. It can be
used to take health care to the next level, ensuring progress against the
most perplexing public health challenges in ways that benefit the global
community.
144 Health Communication in the New Media Landscape
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151
7
E-Health Self-Care Interventions
for Persons With Chronic
Illnesses: Review and Future
Directions
ROBERT L . GLUECKAUF AND MIA L IZA A . LUSTRIA
The growing complexity of today’s health care environment has made
it increasingly important for consumers to take a more active role in
making health decisions and in self-care management. This is particularly
urgent for the 1 in 10 Americans who have debilitating chronic condi-
tions, such as diabetes, heart disease, and mental illness. Chronic ill-
nesses cost the United States approximately $1.3 trillion annually—of
this amount, $1.1 trillion per year is associated with lost productivity and
$277 billion is spent on treatment (DeVol et al., 2007). Since the preva-
lence of chronic conditions tends to increase with age, these figures are
estimated to increase exponentially as the baby boomer generation ages
(Garrett & Martini, 2007; Thorpe, 2006).
Active engagement in self-management strategies is critical for the
treatment and effective long-term care of chronic diseases (Bodenheimer,
Lorig, Holman, & Grumbach, 2002; Woolf et al., 2005). Effective self-
management hinges not only on promoting informed decision making, but
also on engaging individuals with chronic illnesses collaboratively in their
own care through the development of problem-solving skills and coping
strategies (Bodenheimer et al., 2002). There is a growing body of research
supporting the importance of the role of patient-centered care for long-
term illness on a number of health outcomes, such as reduced hospital vis-
its, improved coping, improved quality of life, disease control, and reduced
152 Health Communication in the New Media Landscape
risk for complications (Del Sindaco et al., 2007; Gately, Rogers, & Sanders,
2007; Hurley et al., 2007; Kennedy et al., 2007; Lorig, Ritter, Laurent, &
Fries, 2004; McManus et al., 2005; Monninkhof et al., 2004; Richardson et
al., 2006; Smeulders, van Haastregt, van Hoef, van Eijk, & Kempen, 2006;
Strong, Von Korff, Saunders, & Moore, 2006; Williams et al., 2004; Wilson
& Mayor, 2006). Key components of effective self-management include
the development of behavioral skills in performing recommended strate-
gies for optimal health (e.g., blood pressure monitoring, glucose monitor-
ing, exercise, and problem-solving skills), as well as adherence to treatment
regimens (Bodenheimer et al., 2002; Del Sindaco et al., 2007; C. Griffiths
et al., 2005; Hurley et al., 2007; Kennedy et al., 2003; Lamers, Jonkers,
Bosma, Diederiks, & van Eijk, 2006; Lorig et al., 2004; McCarthy et al.,
2004; McManus et al., 2005; Richardson et al., 2006; Strong et al., 2006).
Telecommunication technologies, especially Internet- and telephone-
based systems, have the ability to extend the reach of self-management
education programs to individuals with chronic illnesses in a number of
ways. Both the Internet and telephone are viable and low-cost media that
can be used to access health information and health care services and are
capable of overcoming geographic and time barriers. Despite ongoing
concerns about the quality of health information and accessibility of tele-
communication-mediated resources, a growing number of individuals with
chronic illnesses are going online to seek information about specific diseas-
es and their treatment, as well as to do research on prescription and over-
the-counter drugs (Fox, 2007). The Pew Internet & American Life Project
reported in 2007 that 86% of Internet users with a disability or chronic ill-
ness went online to research at least 1 of 17 health topics (Fox, 2007). This
information influenced their medical decision making, led them to ask more
questions of their providers, enhanced their ability to cope with chronic ill-
ness, and changed the way they thought about and managed their diet,
nutrition, and physical activities (Fox, 2007; T. H. Wagner, Baker, Bundorf,
& Singer, 2004). Persons with stigmatized diseases (e.g., HIV/AIDS, epi-
lepsy, mental illness) find the Internet and telephone particularly appealing
due to the increased privacy they offer for discussing sensitive, often taboo
topics in a “safe, non-judgmental” environment (Berger, Wagner, & Baker,
2005). Caregivers of individuals with chronic illnesses also use the Internet
and telephone to seek support with others going through similar experi-
ences (Lasker, Sogolow, & Sharim, 2005; Patsos, 2001; Rossi et al., 2006;
Stakisaitis, Spokiene, Juskevicius, Valuckas, & Baiardi, 2007).
The primary objectives of this chapter are to conduct a review of
e-health outcome research on persons with chronic illnesses and to
Chapter 7 E-Health Self-Care Interventions 153
highlight issues that require further attention and development. First,
specific procedures and inclusionary criteria used in performing the
current review are described. Second, the findings of randomized con-
trolled trials on the effects of e-health interventions on health status, and
in influencing health-promoting activities, and psychosocial function-
ing are analyzed. Third, key conceptual and methodological problems
that limit the validity, generalizability, and utility of e-health outcome
research are delineated. Finally, the practice implications of e-health
intervention studies are addressed.
METHODOLOGY
An extensive search of e-health outcome interventions published from
2002 to 2007 in peer-reviewed journals across three databases, Medline,
PsycINFO, and CINAHL, was performed. The descriptors used in our
search queries were as follows: “World Wide Web,” “Internet,” “tele-
phone,” “health,” “intervention,” “randomized controlled trial,” cancer,”
“depression,” “diabetes,” “cardiovascular disease,” “obesity,” and “chronic
disease.” Titles and abstracts of studies retrieved in the initial search
then were examined for relevance. This process facilitated a reduction
of the list to a total of 150 Internet and 393 telephone studies. These
articles were obtained and subsequently subjected to a more thorough
qualitative review. We formulated strict exclusion and inclusion criteria
to guide selection of relevant articles in order to minimize selection bias.
These criteria are summarized in Table 7.1.
The authors coded the articles independently, and the results were
compared for accuracy. Any disparities in judgment that emerged dur-
ing the coding process were resolved through discussion and consensual
agreement. Of the 543 potentially relevant studies, only 27 Internet- and
44 telephone-based articles satisfied all four inclusion criteria.
RESULTS
Telecommunication and Technology-Based Health
Interventions
What makes e-health interventions appealing to people with chronic ill-
nesses and health educators? Cassel et al. (1998) aptly described the
INCLUSION CRITERIA FOR SYSTEMATIC REVIEW
INCLUSION CRITERIA OPERATIONAL DEFINITION
1. Contained a substantial e-health intervention
component
The intervention must have had a substantial e-health component in that the major
delivery mode must have been either via telephone, videoconferencing, or via the
Web (e.g., Web site, e-mail, online discussion group).
2. Focused on patients with a chronic illness The intervention had to be focused on individuals diagnosed with a chronic, recur-
rent condition or illness (e.g., diabetes, cancer, cardiovascular disease, PTSD) for
an average of 1 year. Studies that focused primarily on caregivers of individuals
with chronic illnesses were excluded. Studies that largely focused on prevention
and targeted a general sample population were also excluded (e.g., anti-smoking,
alcoholism, eating disorders, physical activity).
3. Focused on self-management The intervention must have been focused on self-management. This included
studies that actively involved patients in decision making and treatment planning
and that focused on developing strategies to improve health outcomes
(e.g., cognitive-behavioral therapy that has a problem-solving component or focuses
on adherence), personalized planning and treatment, and patient feedback or track-
ing of target outcomes (e.g., through journaling, discussion groups/forums, commu-
nication with experts and peers).
4. Randomized controlled trial Only studies that used true experimental designs (i.e., random assignment to
conditions and at least one control group) were included in the review.
Table 7.1
Chapter 7 E-Health Self-Care Interventions 155
Internet as a “hybrid channel” that combines the broad reach of mass
communication channels with the persuasive capabilities of interperson-
al channels. Synchronous Web technologies such as chat and computer
conferencing allow real-time interactions that approach the reflexiv-
ity of face-to-face encounters (Street, 2003). Games, simulations, and
other interactive online activities can be used to model healthy behaviors
and teach proper management and prevention skills in engaging envi-
ronments (Walther, Pingree, Hawkins, & Buller, 2005). Web delivery
also allows for the presentation of information in a variety of formats
(e.g., graphics, audio, video) to suit different learning styles and literacy
levels.
The power of Web technologies for supporting self-help behavioral
interventions, however, largely rests in the ability to automate delivery of
self-regulatory tools tailored to meet particular patients’ needs. Comput-
erized implementation of theory-based approaches for changing indi-
vidual health behaviors has become more sophisticated over the years
as we continue to learn about what Web features contribute the most to
efficacy.
Although Web-based technologies have the distinct advantage of
simulating real-time, face-to-face transactions, interventions using these
applications have been restricted to community organizations and to
individuals who have the financial resources to afford computers and
Internet access. Populations that are economically disadvantaged and
those who live in rural communities typically have not been included in
Web-based health care intervention studies. Furthermore, persons with
chronic illnesses, especially those over 60 with low technology comfort
and skill, may be reluctant to use the Internet to participate in e-health
clinical trials. Thus, the telephone provides a low-cost, easy-to-use, and
universally available option for delivering health care information and
services.
The overall findings of this review indicate that technology-based
delivery of self-care programs for managing chronic illnesses is a viable
alternative to traditional methods of delivery (see Table 7.2 at the end
of the chapter for a summary). The majority of studies reported that
e-health intervention was significantly more effective than routine medi-
cal care. Lack of success was largely due to problems of engagement, with
high attrition rates. The majority of the studies showed positive results
on target health outcomes or were partially successful (e.g., reported
positive or improved outcomes only on some targeted outcomes).
The following section reviews e-health outcome studies in four major
156 Health Communication in the New Media Landscape
categories: mental health conditions, diabetes, cardiac-related disorders,
and other chronic illnesses. Within each category, we focus separately on
the findings of Web-based and telephone-based interventions.
Telecommunications-Based Self-Care Intervention
for Mental Health Conditions
Eleven of 71 telecommunication-based outcome studies focused on
mental health: 6 in the area of depression, 3 on panic disorder, and 1
each in the areas of posttraumatic stress disorder and complicated grief.
Technology-based delivery is especially promising for this health context
for several reasons. The privacy of Web- and telephone-based delivery
encourages open communication about topics participants may feel un-
easy discussing freely face-to-face. Telecommunication-based delivery
also has the potential of increasing people’s access to a limited pool of
skilled mental health professionals trained in evidence-based therapies
(e.g., cognitive-behavioral therapy or interpersonal therapy). These
modalities have the distinct advantage of bringing together peers with
similar stigmatizing conditions across different geographic locations and
walks of life, thus increasing their exposure to positive role models and
creative problem-solving efforts (C. M. Andersson, Bjaras, Tillgren, &
Ostenson, 2005; K. M. Griffiths & Christensen, 2006; T. H. Wagner
et al., 2004). Computing technology, particularly Web-based applica-
tions, can also facilitate automation of routine aspects of therapy, such as
patient assessment and monitoring and gathering of patient feedback, all
of which can be conducted either synchronously or asynchronously.
Results of Web-Based Mental Health Interventions
Similar to the findings of Griffiths and Christensen (2006), our review
revealed an overall positive pattern of results for Web-based mental
health interventions. Six of the seven Web-based psycho-educational in-
terventions for persons with mental health conditions reported success
on all or most of the targeted outcomes. One trial found no significant
effects of the Web-based program on participants’ depressive symptoms;
the authors of the article attributed their null findings to lack of partici-
pant engagement and limited contact with therapists (see Clarke et al.,
2002).
Web-based mental health outcome studies relied heavily on multi-
modal methods of delivery using a combination of educational Web sites,
Chapter 7 E-Health Self-Care Interventions 157
online discussion forums, and minimal mediated contact with experts
either via phone or e-mail. Only Wagner et al. (2006) used a single
intervention modality (i.e., e-mail communication). Improvements in
targeted symptoms (e.g., depressive symptoms and panic attacks) were
ascribed to participant self-management through the use of a combi-
nation of cognitive-behavioral training, coping and stress management
exercises, journaling, and feedback. Feedback was provided through
moderated discussion forums and mediated contact with an expert
either via phone or e-mail. Lack of engagement and high dropout rates
were observed in studies that lacked substantial feedback mechanisms
or contact with experts (e.g., Clark, 2002). This concern was highlighted
in two randomized controlled trials of ODIN (Overcoming Depression
on the Internet), a Web-based self-help program designed to reduce
depression among individuals suffering from mild to moderate depres-
sion. In the first trial of ODIN, Clarke (2002) found that only patients
with low baseline levels of depression showed modest improvements
in depressive symptoms following treatment in the Web intervention.
Clarke attributed this finding to limited participant engagement with
the purely self-help Web-based program. This problem was mitigated in
a subsequent randomized controlled trial of ODIN (Clarke et al., 2005).
In this trial, participation in the online cognitive-behavior self-help ther-
apy program was boosted through the use of reminders delivered via
e-mail and postcards. As a result, participants in the treatment group
showed significantly greater improvements in depressive symptoms than
those in the control group. There were no significant between-subject
differences based on the type of reminder provided.
Although the ODIN trials provided evidence for the efficacy of
purely self-help online programs, the provision of even minimal thera-
pist feedback via e-mail was shown to boost the effects of treatment on
target outcomes. For example, Andersson (2005) found that participants
exposed to a self-help Web site and moderated online discussion group
with minimal therapist feedback showed significantly greater improve-
ments in mental health outcomes than a comparison group with no
therapist contact. The incremental effect of minimal therapist contact
in an online cognitive-behavioral self-help program was likewise tested
by Klein et al. (2005), who compared three groups: an information-only
control group, Web-based cognitive behavioral treatment for agorapho-
bia with e-mail expert support, and Web-based cognitive-behavioral
treatment without e-mail support. They found both cognitive- behavioral
approaches were effective in improving physical health ratings and
158 Health Communication in the New Media Landscape
reducing physician visits compared to the control condition. Further-
more, attrition rates were lowest among participants who had access to
minimal therapist contact via e-mail.
Results of Telephone-Based Mental Health
Interventions
Similar to the findings of Web-based mental health interventions,
telephone-based cognitive-behavioral approaches showed significantly
greater improvements on target outcomes from baseline to follow-up
than those of routine medical care. All four telephone-based outcome
studies showed significant positive effects across several mental health
outcomes.
It should be noted, however, that participants in telephone
interventions typically had fewer options for seeking out mental health
information and interactions with peers than their Web-based counter-
parts. Telephone protocols included an educational workbook focusing
on self-care skills (e.g., exercise and socialization) and ongoing medi-
cation management, as well as one-on-one telephone-based cognitive-
behavioral intervention with an experienced clinician emphasizing the
development of problem-solving skills, relapse prevention, effective
thinking, and the need to increase pleasant daily activities. The modal
number of individual sessions was 12, each lasting approximately 15 to
30 minutes. In contrast, Web-based interventions included educational
Web sites, online discussion forums, and e-mail contact with experts.
However, direct contact with therapists over the telephone was gener-
ally more time intensive than that offered by Web-based interventions.
The outcomes of the four telephone-based mental health interven-
tions were uniformly positive. Across the three depression treatment
studies (Dietrich et al., 2004; Hunkeler et al., 2006; Simon, Ludman,
Tutty, Operskalski, & Korff, 2004), participants who received telephone-
based training showed significantly greater decreases in depressive
symptoms from baseline to follow-up than routine care controls (i.e.,
pharmacotherapy and routine office visits). In the one study on anxi-
ety disorders (i.e., generalized anxiety and panic disorder), signifi-
cantly greater reductions in anxiety and depression were obtained in the
telephone-based cognitive-behavioral intervention than in the routine
care group (Rollman et al., 2005).
Although the findings of telephone-based mental health inter-
vention outcome studies were promising, three of four studies used
Chapter 7 E-Health Self-Care Interventions 159
a single routine care control condition, thus limiting the strength of
causal conclusions about the benefits of telephone-based cognitive-
behavioral therapy. It is entirely plausible that increased contact with
treatment staff in itself may have resulted in differential improvements
in the telephone interventions. However, in the one study that used
a contact control group, Simon et al. (2004) found that the telephone
care management had significantly smaller effects on improvement in
depressive symptoms and patient satisfaction than the telephone-based
cognitive-behavioral intervention program. Thus, preliminary evidence
was obtained supporting the incremental advantages of telephone-based
mental health intervention in reducing depression in patients with diag-
nosable mental health problems over standard treatment and follow-up.
Future outcome research in this domain needs to incorporate control
conditions that permit the testing of alternative rival hypotheses for the
benefits of e-health treatment.
Diabetes Management via Telecommunication-Based
Self-Help Programs
In recent years, Web and telephone delivery of self-management pro-
grams have emerged as popular approaches to the management of dia-
betes. Self-management is particularly important for individuals with
diabetes, given the complexity of the disease and the numerous comor-
bid conditions associated with it. In order to successfully manage their
disease, diabetes patients must not only take medications and maintain a
healthy lifestyle but also monitor a number of variables (i.e., blood glu-
cose values, blood pressure, cholesterol levels, weight, food intake, and
physical activity) in order to reduce risk factors. As a result, Web- and
telephone-based interventions focused on diabetes self-management are
more complex than others, and most have, in addition to an educational
component, built-in self-regulatory activities such as tools for uploading
and monitoring blood glucose levels or means for calculating food intake
or body mass index, strategies for enhancing adherence to the diabetes
regimen, and message framing to tailor treatment to the specific needs
of the individual with diabetes.
Fourteen of the 71 articles reviewed here focused on diabetes self-
management. Seven were primarily Web-based, and 7 were telephone-
based interventions. In contrast to the self-care interventions for mental
health, the proportion of diabetes studies reporting positive outcomes was
substantially lower, particularly among those that were telephone-based
160 Health Communication in the New Media Landscape
interventions. Of the 14 studies, 8 showed incremental benefits for the
telecommunication-based approaches, whereas the remainder reported
null findings. There was also a substantial discrepancy between the out-
comes of Web- and telephone-based interventions. Six of 7 Web-based
studies showed positive effects, whereas only 2 of 7 telephone interven-
tions led to substantial changes on key outcomes, such as HbA
1c
levels.
In addition, problems with participant engagement and retention were
noted across both intervention modalities.
Results of Web-Based Diabetes Self-Care
Management Studies
Web-based diabetes intervention programs typically included (1) in-
structional support for patients via letters advocating lifestyle modifi-
cation; (2) physician and/or patient education on the importance of
taking medication, how to read medical instructions, and how to orga-
nize medication regimens, as well as structural supports such as regular
reminders from providers either during routine visits or via phone or
mail; (3) information on how to collect blood glucose levels at differ-
ent times in the day to help identify peaks in glycemic levels as well
as to help monitor triggers; and (4) tailoring of health messages to suit
the unique needs, information-processing styles, and stages of disease,
culture, values, and risk factors of individual patients. Tailored materials
have been shown to be more effective in motivating patients to make
general dietary changes (e.g., increase intake of fruit and vegetables
and to reduce intake of dietary fat) than non-tailored materials (Brug,
Oenema, & Campbell, 2003; Brug, Oenema, Kroeze, & Raat, 2005; De
Bourdeaudhuij & Brug, 2000; Kroeze, Werkman, & Brug, 2006; Oen-
ema, Brug, & Lechner, 2001; Oenema, Tan, & Brug, 2005).
In their conceptually driven investigation, McKay et al. (2002) and
Glasgow et al. (2003) tested the efficacy of D-Net, a Web-based diabe-
tes self-management intervention, on a group of older Type 2 diabetes
patients. The first trial involved testing the efficacy of four interventions
on a subset of patients ( n = 160). The first group was an information-only
control. The second group received individualized feedback through
computer-mediated access to a coach trained to provide personalized
dietary advice. In addition, participants were able to input their daily
intake of fruits, vegetables, and saturated fats and graph this information.
This allowed them to receive real-time feedback and track their prog-
ress. The third group had access to a peer-directed (but professionally
Chapter 7 E-Health Self-Care Interventions 161
moderated) online support group that allowed them to exchange diabe-
tes-related information, coping strategies, and emotional support. Partic-
ipants also had access to a more structured conference area that featured
targeted forums on particular topic areas. The final group received com-
bined interventions 3 months after the trial. The second trial tested the
same conditions on a larger group ( N = 320) 10 months after the origi-
nal trial. All conditions demonstrated moderate success at 3 months as
well as at 10 months on targeted behavioral, psycho-social, and some
biological outcomes. There were no significant differences between the
groups, although the group receiving tailored self-management had the
lowest overall cholesterol levels. The addition of tailoring and peer sup-
port did not seem to significantly improve Web use or engagement over
time. Logons to the D-Net Web site gradually decreased beginning in
the third month of the trial, and the lowest usage was observed during
months 7 to 10 (Glasgow et al., 2003).
The remaining four Web-based diabetes management interventions
reported more positive results and better engagement overall than the D-
Net studies (see Cho et al., 2006; C. Kim et al., 2007; Kwon et al., 2004;
Tatti & Lehmann, 2003). The major focus of these studies was support
for blood glucose monitoring with substantive feedback from experts to
help interpret results of glucose-level values. Tatti and Lehmann’s study
largely focused on patient education by providing a small group of Type
1 diabetes patients ( n = 24) with access to AIDA, a free online diabe-
tes simulator. The simulator was used to demonstrate realistic scenarios
that might result from different plasma insulin and blood glucose levels.
At 6-week follow-up, HbA
1c
and hypoglycemic episodes (e.g., dizziness,
nausea, vomiting) decreased more for the treatment group than for the
control.
To address the issue of engagement, Kwon (2004; n = 110) and Cho
(2006; n = 80) tested the effects of a Web-based blood glucose moni-
toring system after 12 weeks and 30 months, respectively. Participants
in each trial had access to an online blood glucose monitoring system
as well as trained clinical instructors who, upon reviewing uploaded
glucose values, provided stage-based recommendations on a biweekly
basis. Significant reductions in HbA
1c
levels were observed in the treat-
ment group and sustained over time (after 30 months). More notable
decreases were observed among participants with HbA
1c
levels below
7% at baseline than among those with HbA
1c
levels above 7%. A similar
trend was demonstrated by C. Kim et al. (2007; n = 40) in a trial test-
ing the efficacy of a Web-based blood glucose monitoring system with
162 Health Communication in the New Media Landscape
tailored medical advice and brief reminders sent through a messaging
system. Noteworthy is the fact that all three glucose monitoring systems
were tested on a Korean population, which may suggest that the differ-
ential compliance rates may be based more on cultural differences than
on the intervention itself.
Results of Telephone-Based Diabetes Interventions
Telephone intervention typically provided one-on-one training with a dia-
betes educator focusing on (1) meal planning, information about diabetes
complications, exercise programs, and the risks of smoking and alcohol for
people with diabetes; (2) collaborative problem solving to enhance dia-
betes management; and (3) monitoring insulin, carbohydrate intake, and
blood glucose values. Consistent with the findings of the telephone-based
mental health outcome studies (see results of Telephone-Based Mental
Health Interventions section, p. 158) , participants in telephone-based
diabetes interventions had access to fewer educational and peer support
options than those offered by Web-based diabetes training. Note, also,
that the average duration of a diabetes- focused telephone session was
substantially shorter than its mental health counterpart.
As mentioned above, 7 of 14 articles used the telephone as the major
format for delivering diabetes self-care management to adults and chil-
dren with diabetes. In contrast to the positive pattern of findings of the
Web-based studies, only 2 of 7 telephone-based interventions led to
significantly greater improvements on key outcomes than the control
groups. Two possible reasons may explain the discrepant pattern of the
findings between the two treatment modalities and the limited impact of
the telephonic self-care interventions. First, economically disadvantaged
and disruptive living conditions were noted more frequently among par-
ticipants of telephone-based diabetes interventions than among samples
of Web-based diabetes interventions. Investigators reported that such
living circumstances made it difficult to schedule telephone sessions on
a regular basis, leading to high rates of no-shows and cancellations (see,
e.g., Krein et al., 2004). This factor may have led to disproportionately
lower success rates in telephone-based diabetes outcome studies. A sec-
ond limiting factor may be the duration of diabetes telephone counseling
sessions. Telephone-based diabetes interventions were 7.5 minutes in
average length, approximately 50% the duration of a typical telephone-
based mental health counseling session. This may have contributed to the
substantially weaker effects of this mode of intervention on physiological
Chapter 7 E-Health Self-Care Interventions 163
markers, such as HbA
1c
and lipid ratios. The third factor was the higher
illness severity and comorbidity rates reported in telephone-based dia-
betes studies. Patients with poor glycemic control and/or comorbidities
(e.g., severe hypertension and renal disease) may have presented dif-
ficult challenges to telephone interventionists, requiring coordination
efforts beyond the scope of their brief 7.5-minute interactions with dia-
betes participants. Thus, diabetes investigators should take into account
potential barriers associated with participants’ lifestyles, the logistics of
treatment implementation, and illness severity in designing future dia-
betes telephone-based interventions.
Telecommunications-Based Self-Care Intervention
for Cardiac Conditions
Twelve of 71 articles in this review focused on telecommunications-
based self-help interventions for adults with cardiac conditions. Eleven
studies used the telephone as the primary mode of treatment delivery.
Only 1 study evaluated the effects of Web-based cardiac self-care on
participants’ health functioning (Southard et al., 2003).
Web-Based Self-Care Intervention
for Cardiac Conditions
Cardiac rehabilitation and secondary prevention programs have evolved as
an accepted therapy for patients of cardiovascular diseases. These programs
are endorsed as effective and useful by the American Heart Association
and the American College of Cardiology in the treatment of patients with
coronary artery disease and chronic heart failure (Balady et al., 2007).
A meta-analysis found that secondary prevention programs posi-
tively affect processes of care (reducing risk and improving use of
proven efficacious therapies) and quality of life and reduce incidence
of myocardial infarctions by 17% over a median follow-up of 12 months
(Clark, Hartling, Vandermeer, & McAlister, 2005). Traditional cardiac
rehabilitation and secondary prevention programs have evolved from
largely exercise-based training programs to more comprehensive and
multifaceted interventions with the following core components: base-
line patient assessment, nutritional counseling, risk factor management
(lipids, blood pressure, weight, diabetes mellitus, and smoking), psycho-
social interventions, and physical activity counseling (Balady et al., 2007;
Thomas et al., 2007). Delivery of cardiac rehabilitation programs also
164 Health Communication in the New Media Landscape
has evolved from clinic-based outpatient programs to include home-,
telephone-, and Web-based delivery approaches.
There was, however, a dearth of Web-based self-care interventions
for cardiac rehabilitation found in this review. There are several potential
reasons for this. During the initial screening, we discovered that most
interventions dealing with cardiovascular disease were preventive in
nature. Cardiovascular disease prevention and secondary risk manage-
ment were often folded into efficacy studies of self-care management
interventions for comorbid conditions such as diabetes and cancer. Car-
diac rehabilitation services also usually involve more substantial super-
vision from trained health care professionals, given the vulnerability of
patients who are typically referred for such services, for example, follow-
ing nonfatal heart attack. These interventions were excluded from the cur-
rent review because of their-less-than substantial self-care components.
Even the single Web-based cardiac rehabilitation self-management out-
come study included in this study by Southard et al. (2003), while qualify-
ing as self-care, still had significant involvement from a nurse-therapist.
Southard et al. (2003) compared usual care patients to those involved
in a 6-month Web-based case management program involving e-mail
and telephone contact with a nurse–case manager and dietitian. Self-
care components included an online community that enabled patients
to communicate through discussion groups and e-mail as well as online
assessments, interactive education modules, and dynamic self-monitoring
tools. Participants in the intervention group experienced significantly
fewer cardiovascular events and greater weight loss than the usual care
group. No significant differences in depressive symptoms, blood pres-
sure levels, and dietary habits were found between groups. Significant
cost savings ($413 per patient) and a return on investment of 213% were
also estimated for the patients assigned to the Web-based intervention.
While this study provides preliminary evidence for the efficacy and cost-
effectiveness of Web-based cardiac rehabilitation programs, the small
sample and limited diversity in the patient sample (e.g., 97% White,
52% with college degree or higher level of education, 64.2% with annual
incomes of more than $40,000) limit generalizability of the results.
Telephone-Based Self-Care Intervention
for Cardiac Conditions
The diversity of target problems and populations was substantially greater
in the cardiac outcome studies than in the diabetes and mental health
Chapter 7 E-Health Self-Care Interventions 165
outcome studies. Of the 11 cardiac studies, 5 evaluated the impact of
health failure management, and one each tested the impact of smoking
cessation treatment, depression/anxiety reduction training, and self-care
management after cardiac rehabilitation, cardiac surgery, implantation
of a cardioverter defibrillator, and heart transplantation. Seven studies
showed significant differential positive effects for telephone-based in-
tervention, whereas 4 reported no significant post-treatment differences
on target outcomes between groups. The remainder of this section will
focus on the pattern of results for heart failure management ( n = 5), the
only cardiac intervention category for which a comparison between a
minimum of two outcome studies could be performed. The treatment
approach typically consisted of health care educator–facilitated training
on weight management, diet, and exercise. Participants also were en-
couraged to discuss over the telephone recent exacerbations of heart
failure symptoms, and any concerns they encountered in adhering to
their medication regimen and other facets of treatment. The results of the
heart failure management studies were mixed. On the positive side,
three of five studies (DeWalt et al., 2006; Dunagan et al., 2005; Sisk
et al., 2006) reported that telephone-based interventions led to signifi-
cantly lower rates of hospitalization for older adults with heart failure
than did routine care control groups. In contrast, only one study (Sisk
et al., 2006) found significant improvements in participants’ daily func-
tioning or health-related quality of life from baseline to the 12-month
follow-up. This pattern of results has been described in previous reviews
(McAlister, Lawson, Teo, & Armstrong, 2001). Traditional face-to-face
disease management programs have significantly reduced hospitalization
rates for adults with heart failure but have had a less clear impact on
quality of life. Various factors such as variations in illness severity and
treatment intensity (i.e., amount of direct patient contact) have been pro-
posed in previous studies to account for limited improvement in quality
of life in heart failure self-care interventions, but the evidence supporting
this hypothesis has been inconsistent (cf., Dunagan et al., 2005).
OTHER ONLINE SELF-HELP PROGRAMS
FOR VARIOUS CHRONIC DISEASES
This section discusses the use and efficacy of Web- and telephone-based
self-management programs for other chronic diseases. A total of 28 ar-
ticles focused on a wide range of other health conditions. Eight focused
166 Health Communication in the New Media Landscape
on pulmonary disorders ( n = 8), 8 on cancer ( n = 8), and 5 on chronic
pain; the remaining 7 articles covered a variety of health conditions (e.g.,
HIV/AIDS, stroke, multiple sclerosis, and head injury). Although a re-
view of the findings of this wide range of studies is beyond the scope of
this chapter, we highlight notable trends and major issues in the use of
Internet and telephone modalities in self-care management across these
conditions.
Telecommunication-Based Self-Care Intervention
for Pulmonary Conditions
Studies of three Web-based interventions and one telephone-based in-
tervention focused on self-management of asthma, all of which had a sig-
nificant patient education component focusing on understanding asthma
and environmental triggers, as well as strategies to control attacks and
manage asthma via medication adherence and self- monitoring. Three
Web-based studies yielded positive outcomes. In contrast, one telephone-
based intervention yielded mixed results. Krishna et al. (2003) evaluated
a multimedia interactive educational program on asthma patients and
their caregivers through the use of animated vignettes depicting real-
life scenarios requiring decisions about alternative behaviors that would
likely affect asthma. This educational program resulted in increased
asthma knowledge, and concomitant declines in asthma symptom days,
emergency visits to physicians, and use of rescue medications. Similarly
successful, Jan et al. (2007) tested a telemonitoring approach via the
Blue Angel monitoring program. Patients were encouraged to monitor
their peak expiratory flows and asthma symptoms daily on the Internet.
These values were assessed by their physicians, who then communicated
a tailored self-management program to their patients via e-mail and tele-
phone. Joseph et al. (2007) tested the efficacy of Puff-City, a culturally
tailored program based on theory-based models that addresses nega-
tive asthma management behaviors among African American asthma
patients in an urban area. Messages were framed based on users’ beliefs,
attitudes, and personal barriers to change.
In the one telephone-based self-care intervention, Khan and associ-
ates (2004) compared the effects of a comprehensive asthma education
program to those of routine asthma care on the development and use
of action plans and the frequency of asthma symptoms. The program
trained parents to recognize and avoid triggers, to use written asthma
action plans, and to seek help as appropriate. On the positive side, the
Chapter 7 E-Health Self-Care Interventions 167
intervention group children were significantly more likely than controls
to possess a written asthma action plan. However, no significant differ-
ences in post-treatment improvement were found between the interven-
tion and control groups in the frequency of asthma symptoms. Khan and
associates attributed this null finding to the unanticipated strength of the
usual care condition. Seventy percent of parents in the usual care group
had a written asthma action plan at follow-up, and follow-up symptoms
in this group were half of baseline values.
Telecommunication-Based Self-Care
Intervention for Chronic Pain
Five articles—four on Web-based interventions and one on a telephone-
based intervention—focused on self-management of chronic pain. One
was on rheumatoid arthritis (van den Berg et al., 2006), one on osteo-
arthritis (Blixen, Bramstedt, Hammel, & Tilley, 2004); one on chronic
back pain (Buhrman, Fältenhag, Ström, & Andersson, 2004), and two on
chronic headache (G. Andersson, Lundstrom, & Ström, 2003; Devineni
& Blanchard, 2005). The overall findings of the Web-based interventions
were promising, with most studies showing significant post- treatment
improvement. In contrast, Blixen and associates (2004) found no incre-
mental benefit for telephone intervention on pain complaints.
Web-based interventions involved symptom monitoring and some
form of tailored supervision via communication with experts. In addition
to these main components, van den Berg and associates (2006) held group
meetings every 3 months during the 48-week intervention. During these
meetings, patients were able to meet with other group members and
got demonstrations of new exercises from physical therapists. Despite
this more substantive contact with patients, van den Berg and associ-
ates (2006) only reported success on self-reported outcomes (patients’
perceptions of their ability to meet physical activity recommendations),
but not on actual physical activity as measured by an activity monitor.
The other three interventions reported greater success, which might be
attributed to a more significant cognitive-behavior therapy component.
For example, Devineni and Blanchard (2005) found greater decreases in
headache and other symptoms with the treatment group (who received
training in significant progressive relaxation, limited biofeedback with
autogenic training, and stress management training) than with the wait-
list control. While one might argue that minimal therapist contact might
be a major contributor to success, Andersson and associates (2003) found
168 Health Communication in the New Media Landscape
no significant incremental effects from the addition of telephone sup-
port to a Web-based cognitive-behavior therapy intervention for head-
ache sufferers.
In Blixen and associates’ (2004) telephone study, the intervention group
received six weekly mailings of osteoarthritis health education modules, a
relaxation audiotape, and six weekly 45-minute follow-up telephone self-
management sessions. The control group received usual care from their
rheumatologists. No significant post-treatment differences were found in
pain severity, quality of life, health status, or depression. Only differences
in self-efficacy in managing pain were found between the intervention
and usual care groups at the 3-month assessment phase. However, this
between-group effect was not maintained at the 6-month follow-up.
Telecommunication-Based Self-Care
Intervention for Cancer
Eight articles on telecommunication-based cancer care intervention met
criteria for inclusion in the review. The two Web-based and three
telephone-based interventions focused on self-care management for
women with breast cancer. The remaining three telephone-based inter-
ventions targeted men with prostate cancer, survivors of childhood
cancer, and adult cancer survivors. The remainder of this section will
focus on the pattern of findings from five breast cancer intervention
studies, the only cancer intervention category for which a comparison
between a minimum of two outcome studies could be performed. These
breast cancer studies provided coping skills training using two different
approaches. Owen and associates (2005) examined the effects of a self-
guided online support group for early-stage breast cancer patients over
a 12-week period ( n = 62). Winzeberg and associates (2003) assessed the
psychosocial impact of Bosom Buddies, a 12-week Web-based profes-
sionally moderated, social support group for breast cancer survivors
(n = 72). Of the two approaches, Winzelberg and associates’ moderated
social support group was more efficacious in terms of reducing depres-
sion, perceived stress, and cancer-related trauma among breast cancer
survivors. Compared to the self-guided online social support group, pa-
tients involved with Bosom Buddies viewed the intervention more posi-
tively and were more engaged, logging onto the Web site about three
times a week and posting an average of three messages per week. Partici-
pants in Bosom Buddies used the discussion forum more actively than
they did an online journaling tool provided on the same site.
Chapter 7 E-Health Self-Care Interventions 169
All three telephone-based interventions showed significant incremental
benefits for telephone-based intervention over the control conditions.
Pinto and associates (2005) studied the effects of a telephone-based
moderate-intensity physical activity program on fitness, mood, physical
symptoms, and body image in women with breast cancer. The telephone-
based intervention group reported significantly more total minutes of
physical activities, more minutes of moderate-intensity physical activity,
and higher energy expenditure per week than did controls. The interven-
tion group also outperformed controls on a field test of fitness. Mishel
and associates (2005) tested the effects of a telephone-based cognitive-
behavioral intervention to increase effective coping with the uncertain-
ties of breast cancer in a combined African American and non-Hispanic
White sample. The treatment group reported a significant increase in
positive cognitive reframing, whereas the routine care control group
showed no change from baseline to the 10-month follow-up. There was
also a significant treatment-by-ethnicity effect on the women’s tenden-
cies to catastrophize about the outcomes of breast cancer. African Ameri-
can women showed a significant decline in catastrophic thinking about
breast cancer from baseline to 10 months compared to the control group,
which experienced no change over time. In contrast, no substantial dif-
ferences in the levels of catastrophizing were noted for non-Hispanic
White women in both the cognitive-behavioral and routine care condition
over time. Finally, Allen and associates (2002) compared the effects of a
telephone-based problem-solving training intervention versus usual care on
improvement in coping skills for women with breast cancer. The interven-
tion consisted of two in-person and four telephone sessions with an oncology
nurse, who provided problem-solving skills training and informational mate-
rials to the women over a 12-week period. Women in the problem-solving
group reported significantly lower unmet needs and better mental health
than usual care participants at the 4-month assessment, but this effect was
not maintained at the 8-month assessment. Thus, considerable support was
obtained for the efficacy of both Web- and telephone-based intervention for
women with breast cancer. Further research is needed to evaluate the effec-
tiveness of telephone-based cognitive-behavioral interventions in routine
oncological practice and the cost savings of this approach.
Summary
This review of interventions for self-management of chronic dis-
eases clearly demonstrates the usefulness and efficacy of the use of
170 Health Communication in the New Media Landscape
telecommunication-based modalities for educating patients and helping
them manage their diseases. A key issue in the medical management of
chronic conditions is the problem of maintaining patient engagement in
their own care, which has been addressed in several ways. Tailoring and
individualized problem-solving techniques have been used to facilitate
the creation of personally relevant health messages and individualized
approaches to self-management. When persons with chronic illnesses
perceive messages to be personally relevant, they are more likely to
process this information thoughtfully and be more open to persuasive
efforts. Minimal expert feedback through computer- and telephone-
mediated communication (e.g., e-mail, discussion forums, short messag-
ing services, telephone counseling) has also been helpful in maintaining
patient engagement in the long term. Information and communication
technologies widen access to and reach of trained and skilled health pro-
fessionals, which may be particularly relevant for vulnerable populations
in hard-to-reach areas or who are experiencing rare debilitating diseases.
Key to the success of any online intervention is thoughtful use of health
behavior theory to guide design. This review reveals that knowledge
alone does not change behaviors, and that it is important to provide
self-regulating tools deemed important to building efficacy to engage in
the behaviors being targeted or changed. Web and telephone delivery
approaches provide an opportunity to provide self-regulating tools in a
number of interactive formats (e.g., animation, simulations, graphics)
that can suit many different learning styles. Self-monitoring tools also
allow for real-time demonstrations of how specific behaviors can affect
outcomes. In addition, Web uploads can help health care professionals
provide individualized feedback that patients can use to track their prog-
ress on certain goals.
CONCEPTUAL AND METHODOLOGICAL ISSUES
Several key conceptual and methodological issues were noted in our re-
view of e-health intervention research for individuals with chronic ill-
nesses. First, we address the conceptual limitations of current e-health
studies; this is followed by a discussion of methodological pitfalls. One
of the key conceptual shortcomings of current e-health outcome studies
is the failure to incorporate meaningful control or comparison groups
into the overall research design. Most investigators have employed rou-
tine medical care as the control condition against which the effects of
Chapter 7 E-Health Self-Care Interventions 171
telehealth interventions have been compared. Although this design is
appropriate for initial clinical trials of the efficacy of telehealth interven-
tions, it severely restricts the range of research questions that can be
addressed. Similar to other forms of program evaluation (Glueckauf,
1990; Glueckauf & Ketterson, 2004), advances in e-health outcome
research are predicated upon the ability to test conceptually and
pragmatically meaningful rival hypotheses. For example, McKay et and
associates (2002) compared the effects of Internet-based peer support,
professional coaching, and the provision of information alone on the
psychosocial and physiological functioning of adults with Type 2 diabe-
tes. This design permitted a rigorous test of the differential impact of
two empirically validated theory-driven interventions (i.e., professional
coaching and peer support) against a third alternative (i.e., provision of
information only) that had shown only limited effects in previous inter-
vention research (e.g., Clement, 1995). In addition to hypothesis testing,
e-health investigators should strive to include comparison groups that
allow them to assess the differential effects of a variety of potentially ef-
ficacious technologies. For example, in a family therapy intervention for
rural teens with epilepsy, Glueckauf and associates (2002) tested the ef-
fects of desktop family videoconferencing against a less expensive, more
widely available plain old telephone system (POTS)-based speakerphone
alternative, rather than exclusively comparing the target delivery mode
to traditional face-to-face family therapy.
A second conceptual shortcoming of e-health outcome research was
found in the limited understanding of the relationship between con-
sumer perceptions of the desirability, ease of use, and utility of e-health
interventions and treatment outcome. We continue to lack basic infor-
mation about the social-psychological mechanisms that link intervention
processes to telehealth outcomes. To our knowledge, there are only a
few studies to date that have examined the factors that enhance and
reduce the quality (e.g., clarity, ease of use, distractibility, and comfort)
of telehealth communications across modalities, age groups, minori-
ties, and ethnic groups, and in turn, their relationship with treatment
outcome (Glueckauf & Ketterson, 2004; Glueckauf, Pickett, Ketterson,
& Nickelson, 2006). Furthermore, the relationship between potential
mediators/moderators of treatment (e.g., adherence to treatment, thera-
peutic alliance, and session attendance) and treatment outcome remains
poorly understood.
Third, despite its important theoretical and practical implications,
one of the most neglected conceptual issues in e-health research is that
172 Health Communication in the New Media Landscape
of “optimal fit.” This crucial issue was raised many years ago by behavior-
ist Gordon Paul (1967), who asked, which interventions are most effec-
tive for what types of problems and for which consumer populations.
Although matching telehealth technology to the person and his or her
specific health concerns has long been the fundamental philosophical
stance of assistive technology and telehealth advocates, this tenet cannot
be accepted as inherently veridical and should be subjected to empirical
investigation (Scherer, 2002). It is entirely plausible that certain types of
health concerns may be treated more efficaciously with Web-based solu-
tions than by telephone among certain populations (e.g., urban-dwelling
adults with anxiety disorders). However, the opposite may be the case
in the provision of health information and support services to rural con-
stituencies (e.g., rural older adults with heart failure), who may report
greater health care benefits from telephone or POTS-based videocon-
ferencing interactions than from services rendered over the Internet. It
is also possible that persons with chronic illnesses may show equivalent
outcomes across several different health care delivery approaches.
The issue of optimal fit is especially significant in the development
and evaluation of the impact of e-health interventions across different
ethnic minority populations. As noted previously, we currently have only
limited knowledge about the influence of ethnic and cultural factors
on the efficacy and perceived utility of telecommunication-mediated
outreach programs. Furthermore, we continue to lack basic informa-
tion regarding the influence of attitudinal factors, such as discomfort
with technology and preferences for same-race providers on acceptance
of alternative health care delivery approaches (Glueckauf et al., 2004).
Thus, a key future direction for e-health research is to compare the
effects of different telehealth technologies for specific types of health
care problems across different consumer populations, particularly those
of ethnic minority origin.
In terms of methodological issues, a major shortcoming was found in
the limited number and poor quality of cost-effectiveness analyses per-
formed in current telehealth evaluations. Although a few studies (e.g.,
Emmons et al., 2005; Rotheram-Borus et al., 2004; Southard et al., 2003)
provided preliminary evidence of cost savings, the cost-effectiveness anal-
yses performed in these investigations were poorly delineated and overly
simplistic. Formal cost-effectiveness, cost-benefit, cost-offset and oppor-
tunity cost, or disease-adjusted life years analyses (Whitten et al., 2002)
should be included routinely in all e-health outcome studies, particularly
those that focus on improving health status and psychosocial adjustment.
Chapter 7 E-Health Self-Care Interventions 173
A second methodological shortcoming lies in the limited recruit-
ment of ethnic minorities in e-health intervention research. Only a few
of the studies reviewed here compared the effects of self-care man-
agement across different ethnic groups (e.g., Mishel et al., 2005). Two
possible explanations for this limitation may be located in well-known
barriers to recruitment of minorities and in culturally-based preferences
in the delivery of health care services. E-health researchers typically
have not incorporated minority recruitment coordinators into their sub-
ject accrual plans. It is critical to employ same-culture role models to
reduce fear and distrust about technology as well as perceived negative
intentions of investigators (e.g., Glueckauf & Ketterson, 2004; Sue &
Sue, 1999). Involvement of key community leaders (e.g., church leaders
and local politicians) also may be required to engender enthusiasm and
participation in telehealth program initiatives. E-health researchers may
benefit from exposure to previous studies conducted by health services
researchers who have tested several different models of engagement and
retention (e.g., Gorelick, Harris, Burnett, & Bonecutter, 1998; Hautman
& 1995; Stoy et al., 1995).
IMPLICATIONS FOR PRACTICE
Although further data are needed to justify their widespread use, the
current review suggests that Web- and telephone-based resources that
provide options for engagement with experts and peer interaction may
serve as helpful adjuncts to traditional therapies. A key issue in health
care management of chronic conditions is the problem of maintaining
patient engagement in treatment, which has been addressed in sev-
eral ways. As noted across several studies, one-on-one interaction with
health educators, Web site bulletin boards, and monitored chat groups
are among the preferred uses of e-health among adults with chronic ill-
nesses. These modalities have the potential to provide consumers with
increased social support and useful information enabling them to better
understand their conditions.
Regarding the routine use of e-health technologies, we want to
emphasize that, similar to other clinical proficiencies, e-health requires
specific competencies and skills, such as knowledge about telecommu-
nication systems, telehealth equipment, and data security protocols,
as well as practical skills in the use of telehealth technologies. Health
care professionals also need to be cognizant of the ethical dilemmas and
174 Health Communication in the New Media Landscape
licensure and regulatory requirements related to the practice of tele-
health. Glueckauf and associates (2003) and others (e.g., Maheu, Whit-
ten, & Allen, 2001) have discussed the need for practitioner training
in the delivery of e-health and have provided self-assessment questions
that highlight important technical and practice issues in e-health and
help professionals identify areas where their knowledge and skills may
require further development. Note that these self-study guidelines are
only a beginning point in preparing professionals to deploy telehealth
technologies in their daily practice. Research on practitioner education
in telehealth is needed both to identify the key elements (i.e., critical
content areas) of educational training packages and to assess the impact
of such educational initiatives on provider and client outcomes.
FINAL NOTE
In conclusion, one of the greatest challenges to the viability of e-health
is the need for scientific rigor and creativity in the design and evaluation
of the impact of self-care training and support for people with chronic
illnesses. If the field is to advance, investigators must strive to recruit
adequate samples of ethnic minority populations, employ meaningful
comparison conditions, and evaluate the goodness of fit between tech-
nology and specific health care problems. There is also a dire need for
research that assesses the cost-effectiveness, cost utility, and cost offsets
of e-health interventions.
Table 7.2
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Ahles et al.
(2006)
1,337 patients from 14
rural primary care practices
who reported diverse pain
problems with (n = 644) or
without (n = 693) psychoso-
cial problems were random-
ized to usual care (n = 516)
or intervention groups (n
= 821). All patients in the
intervention groups received
information tailored to their
problems and concerns.
Their physicians also re-
ceived computerized feed-
back about their specifi c
pain problems. A nurse edu-
cator telephoned patients
with pain and psychosocial
problems to teach problem-
solving strategies and basic
pain management skills.
Outcomes were assessed
with the Medical Outcomes
Study 36-Item Short Form
and the Functional Interfer-
ence Estimate at baseline, 6
months, and 12 months.
Chronic pain Telephone,
computerized
feedback to
physicians
The objective of this
study was to com-
pare the effects of
a telephone-based,
pain-management in-
tervention versus usual
primary care practice.
Patients with pain and
psychosocial problems
randomized to the
telephone-based, pain-
management intervention
signifi cantly improved on
ratings of bodily pain, role
functioning, vitality, and
functional interference
compared with usual-care
patients who showed little
change at the 6-month
post-testing. These gains
were maintained at the
12-month follow-up.
(continued )
1
7
5
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Allen et al.
(2002)
164 women with breast
cancer were randomly as-
signed to either a 12-week
problem-solving intervention
(n = 87) or usual care (n =
77). The intervention con-
sisted of two in-person and
four telephone sessions with
an oncology nurse who pro-
vided problem-solving skills
training and informational
materials to the women over
a 12-week period. Usual
care included routine medi-
cal intervention from the
participant’s physician. Par-
ticipants were assessed for
physical and psychosocial
adjustment through tele-
phone and mailed surveys at
baseline, at 4 months, and
at 8 months.
Cancer Telephone To compare the effects
of a problem-solving
training intervention
versus usual care on
improvement in coping
skills for women with
breast cancer.
Problem-solving group
participants had signifi –
cantly lower unmet needs
and better mental health
than usual-care partici-
pants at the 4-month as-
sessment, but this effect
was not maintained at
the 8-month assessment.
The intervention also sig-
nifi cantly decreased the
number and severity of
diffi culties experienced
by women with average
or good problem-solv-
ing skills at 8 months as
compared to the control
group. In contrast, no dif-
ferences were obtained
between intervention
and control groups in
alleviating problems in
women with poor baseline
problem-solving skills at
the 8-month assessment.
Table 7.2
1
7
6
(continued )
Andersson
et al.
(2005)
Two-group randomized trial
with individuals suffering
mild-to-moderate depres-
sion; treatment group (n =
57) had access to a self-
help Web site and partici-
pated in a monitored online
discussion group while con-
trol group (n = 60) only had
access to the online discus-
sion group.
Mental health Web site,
online discus-
sion group
Assess effi cacy of a
10-week Web-based
cognitive behavioral
self-help intervention
with therapist-moni-
tored discussion group
compared to wait-list
condition involving
participation in an on-
line moderated discus-
sion group only.
Improvement in depres-
sive symptoms including
anxiety symptoms and
quality of life in inter-
vention group persisted
through 6-month follow-
up. Attrition was high in
treatment group. Partici-
pation in the Web-based
discussion group only had
no effect on depressive
symptoms.
Andersson
et al.
(2003)
This 6-week study compared
self-recruited headache
sufferers randomized to ei-
ther a Web-based self-help
program with e-mail support
(n = 20), or to a group re-
ceiving, in addition, weekly
individual telephone calls (n
= 24).
Chronic pain
(headache)
Web site,
e-mail,
telephone
Investigate supplemen-
tal effects of adding
minimal therapist con-
tact via telephone to a
stand-alone Web-based
self-help program for
headache sufferers.
Results showed sig-
nifi cant reductions in
headache-related disabil-
ity, depression, maladap-
tive coping strategies,
and perceived stress but
little to indicate any su-
perior performance and
little improvement in the
headache index in the
Internet-only group with
or without expert contact
via phone.
1
7
7
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Andersson
et al.
(2002)
Tinnitus patients were ran-
domized to a 6-week cogni-
tive behavioral therapy in-
tervention through an online
self-help manual and medi-
ated contact with expert (n
= 53) or to a waiting-list
control group (n = 64).
Other chronic condi-
tions (tinnitus)
Web site,
e-mail, medi-
ated contact
with expert
Investigate effi cacy of
a Web-based cognitive
behavior therapy (CBT)
in decreasing distress
in individuals with
tinnitus.
Tinnitus-related distress,
depression, and diary
ratings of annoyance
decreased signifi cantly
in the treatment group
compared to the control.
These improvements
persisted even at 1-year
follow-up.
Bailey
et al.
(2004)
Watchful waiting interven-
tion (WWI) participants
received 5 weekly interven-
tion calls from a nurse.
WWI designed to help men
integrate uncertainty into
their lives by teaching them
to cognitively reframe the
way in which they viewed
their illness and the uncer-
tainty it produced. Control
subjects received usual
care. Outcomes were: new
view of life, mood state,
quality of life, and cognitive
reframing.
Cancer Telephone To compare the effects
of a telephone-based
WWI versus usual care
on men with prostate
cancer’s capacity to
cognitively reframe
and manage the
uncertainty of their
condition.
WWI participants were
signifi cantly more likely
than controls to view their
lives in a new light and
experience a decrease in
confusion following the
intervention. Addition-
ally, intervention subjects
reported greater improve-
ment in their quality of
life than did controls and
believed their quality of
life in the future would be
better than did controls.
Table 7.2
1
7
8
(continued )
Bambauer
et al.
(2005)
Hospitalized acute coronary
syndrome survivors with
mild to severe depression
and/or anxiety at 1-month
post-discharge were ran-
domized to either telephone-
based counseling interven-
tion or a routine care control
group. Intervention patients
(n = 53) received up to
6 30-minute telephone-
counseling sessions focused
on cardiac-related fears, in-
cluding loss of control, loss
of self-image, dependency,
stigma, abandonment,
anger, isolation, and fear
of death. Counseling was
goal-oriented, time-limited,
and issue-focused. Control
patients (n = 47) received
usual care.
Cardiovascular
disease
Telephone To compare the effects
of a telephone-based
counseling intervention
versus usual care on
improvement in self-
rated health among
distressed patients
with heart disease.
Patients in the inter-
vention group reported
signifi cantly greater
improvements in self-
rated health (SRH)
between baseline and
month 3 than the control
group. Although gains in
the intervention group
were maintained at the
6-month follow-up, no
signifi cant differences in
SRH improvements were
observed between the
control and intervention
groups from baseline to
the 6-month assessment
phase.
1
7
9
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Bell et al.
(2005)
Participants with traumatic
brain injury (TBI) were ran-
domly assigned to receive
telephone calls at 2 and 4
weeks and 2, 3, 5, 7, and
9 months after discharge
(n = 85) or standard follow-
up (n = 86). The calls con-
sisted of brief motivational
interviewing, counseling,
and education, plus facili-
tating usual care or usual
care alone through follow-up
appointments and therapy
prescriptions. A composite
outcome was used as the
primary endpoint on an
intent-to-treat basis. The
primary outcome was an
overall composite based on
the scores on the FIM, DRS,
CIQ, FSE, GOS-E, EuroQol,
NFI, PQOL, SF-36, and BSI.
Other chronic condi-
tions (TBI)
Telephone To compare the effects
of a scheduled tele-
phone intervention of-
fering counseling and
education to people
with TBI on behav-
ioral outcomes com-
pared with standard
follow-up at 1-year
post-injury.
The primary outcome was
signifi cantly better for
patients assigned to the
scheduled telephone in-
tervention. Further analy-
ses of the specifi c com-
posite variables showed
that the group receiving
telephone counseling
scored signifi cantly better
on the functional status
and perceived quality of
well-being composites
than did the group
assigned to standard
follow-up care.
Table 7.2
1
8
0
(continued )
Bennett
et al.
(2007)
56 physically inactive adult
cancer survivors (mean = 42
months since completion
of treatment) were assigned
randomly to intervention (n
= 28) and control groups (n
= 28). The motivational in-
terviewing (MI) intervention
consisted of one in-person
counseling session followed
by two MI telephone calls
over 6 months. Control
group participants received
two telephone calls with-
out MI content. Outcomes
measures included the Com-
munity Healthy Activities
Model Program for Seniors
questionnaire, 6-minute
walk evaluation, Medical
Outcomes Study Short-Form
36, and the Schwartz Can-
cer Fatigue Scale and were
administered at baseline, 3
months, and 6 months.
Cancer Telephone To evaluate the effect
of an MI intervention
on increasing physical
activity and on improv-
ing aerobic fi tness,
health, and fatigue in
cancer survivors.
Controlling for time since
completion of cancer
treatment, MI interven-
tion participants reported
a signifi cantly high level
of regular physical activ-
ity than that of control
participants. In contrast,
no signifi cant mean dif-
ferences were reported on
aerobic fi tness, physical
and mental health, and
fatigue between the two
groups. In the interven-
tion group, individuals
with high self-effi cacy
for exercise at baseline
increased their physical
activity more than those
with low self-effi cacy. This
relationship, however, was
not obtained in the con-
trol group.
1
8
1
Table 7.2
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Blixen
et al.
(2004)
32 participants with osteoar-
thritis (OA) were randomized
to a control or intervention
group. The intervention
group received 6 weekly
mailings of OA health edu-
cation modules, a relaxation
audiotape and 6 weekly 45
minute follow-up telephone
self-management sessions.
Participants in the control
group received usual care for
their OA with their rheuma-
tologists. Outcome measures
were administered at base-
line, and at 3 and 6 months
following entry in the study.
Other chronic condi-
tions (osteoarthritis)
Telephone To compare the
effects of a nurse-
run telephone self-
management program
versus usual care on
self-effi cacy, functional
status and depression
for older adults with
OA.
No signifi cant post-
treatment differences
were found on the primary
outcome measures. Only
self-effi cacy in manag-
ing pain differentiated
between the intervention
and usual care groups at
the 3-month assessment
phase. However, this be-
tween-group effect was
not maintained at the
6-month follow-up.
1
8
2
(continued )
Blumenthal
et al.
(2006)
389 patients with end-stage
lung disease awaiting lung
transplantation were ran-
domly assigned to either 12
weeks of telephone-based
coping skills training (n =
200) or to usual medical
care (n = 189). Patients
completed a battery of
quality-of-life instruments
and were followed for up to
3.4 years to assess all-cause
mortality.
Other chronic condi-
tions (lung disease)
Telephone To compare the effects
of a telephone-based
psychosocial interven-
tion versus routine
medical on quality
of life and survival in
patients awaiting lung
transplantation.
The telephone-based
psychosocial intervention
group reported significantly
greater improvements in
emotional distress, anxiety,
depression, feelings of vi-
tality, and perceived social
support than the routine
care control group. There
were 29 deaths (9%) over
a mean follow-up period of
1.1 years. Survival analy-
ses revealed that there was
no difference in survival
between the two groups.
1
8
3
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Boter
(2004)
536 stroke patients were
randomized at discharge to
standard care (n = 273) or
standard care plus outreach
care (n = 263). The out-
reach program included a
problem-solving component
and education about stroke
consequences. The outreach
care consisted of three tele-
phone calls and one home
visit within 5 months after
discharge by stroke nurses.
Six months after discharge,
they assessed the two pri-
mary outcomes: quality of
life (SF-36) and dissatisfac-
tion with care.
Other chronic condi-
tions (lung disease)
Telephone To compare the effects
of a telephone-based
outreach nursing care
program plus usual
care versus usual care
post-stroke on quality
of life and dissatisfac-
tion with treatment.
Outreach care patients
had signifi cantly better
scores on the SF-36 do-
main “Role Emotional”
than controls. No statisti-
cally signifi cant differ-
ences were found on the
other primary outcome
measures. For secondary
outcomes, no statistically
signifi cant differences
were found, except that
intervention patients
used fewer rehabilitation
services and had lower
anxiety scores.
Table 7.2
1
8
4
(continued )
Buhrman
et al.
(2004)
Chronic back pain sufferers
were randomly assigned to a
Web-based cognitive behav-
ioral self-help program
(n = 22) or to a waiting-list
control condition (n = 29).
Chronic pain (back
pain)
Web site,
e-mail,
interactive
CD-ROM,
telephone
Investigate effects
of an Internet-based
cognitive-behavioral
intervention with tele-
phone support for
chronic back pain.
Results showed statisti-
cally signifi cant improve-
ments in catastrophizing,
control over pain, and
ability to decrease pain
in treatment versus con-
trol groups. On the other
hand, there was no signif-
icant interaction between
group and time on the
secondary outcome mea-
sures: multidimensional
pain inventory; pain and
impairment relationship
scale; and hospital anxi-
ety scale.
Carlbring
et al.
(2005)
Two-group randomized
controlled trial for patients
suffering from panic dis-
order (PD). Patients were
randomized to a Web-based
self-help group (n = 25)or to
a live-help therapy session
group (n = 24).
Mental health Web site,
e-mail,
face-to-face
contact with
expert
Compare 10 individual
weekly sessions of
cognitive-behavior
therapy for PD with or
without agoraphobia
with a 10-module self-
help program on the
Internet.
Results suggest that
Internet-administered
self-help plus minimal
therapist contact via
e-mail can be equally ef-
fective as traditional indi-
vidual cognitive-behavior
therapy. This outcome was
confi rmed after 1 year.
1
8
5
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Cho et al.
(2006)
Two-arm randomized con-
trolled trial comparing dia-
betes patients treated with
the Web-based monitoring
system (n = 40) and a usual
care control group (n = 40).
Diabetes Web site,
blood glucose
monitor-
ing system,
charts, tele-
phone, face-
to-face, note
system
Investigate the long-
term effectiveness of
the Internet-based
glucose monitoring
system (IBGMS) on
glucose control in
patients with type 2
diabetes.
The mean A1C and HFI
were signifi cantly lower
in the intervention group
than in the control group,
showing a signifi cant
decrease during fi rst 3
months of the RCT and
remaining stable through-
out the study. Close moni-
toring via a Web-based
glucose monitoring sys-
tem is effective in
controlling blood
glucose and achieving
glucose stability over
time.
Table 7.2
1
8
6
Chouinard &
Robichaud-
Ekstrand
(2005)
Participants (N = 168) were
randomly assigned by co-
horts to inpatient counseling
with telephone follow-up,
inpatient counseling, and
usual care. The inpatient
intervention consisted of
a 1-hour counseling ses-
sion, and the telephone
follow-up included six calls
during the fi rst 2 months
after discharge. The nursing
intervention was tailored
to the individual’s stage of
change. End points at 2 and
6 months included actual
and continuous smoking
cessation rates (measured
by biochemical markers)
and increased motivation
(progress through stages of
change).
Cardiovascular
disease
Telephone To test whether smok-
ers with cardiovascular
disease (CVD) receiv-
ing a nurse-delivered
inpatient smoking
cessation counsel-
ing intervention with
telephone follow-up
(Group 1) or without
(Group 2) will present
higher point-prevalent
smoking abstinence,
higher rates of con-
tinuous abstinence,
and a better progres-
sion to ulterior stages
of change at 2 and
6 months after hos-
pital discharge than
the usual care group
(Group 3).
Assuming that surviving
patients lost to follow-
up were smokers, the
6-month smoking absti-
nence rate was signifi –
cantly higher (41.5%) in
the inpatient counseling
with telephone follow-
up group (Group 1),
compared with both the
inpatient counseling with-
out follow-up (30.2%)
(Group 2) and usual care
groups (20%) (Group
3). Progress through
more advanced stages of
change was also signifi –
cantly greater for Group 1
(43.3%) than both Group
2 (32.1%) and Group 3
(18.2%) at the 2- and 6-
month follow-ups. Stage
of change at baseline and
intervention predicted
smoking status at
6 months.
(continued )
1
8
7
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Clarke
et al.
(2002)
Participants in this 28-week
trial were randomized to an
Internet-based, cognitive
therapy, self-help program
for depression (n = 144) or
a no-access control group (n
= 155). Participants in both
groups were free to obtain
nonexperimental, usual care
services for their depression.
Mental health Web site,
e-mail, snail
mail
Evaluate effects of an
Internet-based cogni-
tive therapy self-help
program for depression
on levels of depres-
sion of self-reported
depressed and nonde-
pressed individuals.
Results showed no sig-
nifi cant effects of the
Internet program on de-
pression members across
the entire sample. How-
ever, post-hoc, explor-
atory analyses revealed
a modest effect among
persons reporting low
levels of depression at
intake. Authors explained
that the negative results
might have resulted from
infrequent patient use
of the Internet site, or a
more seriously depressed
sample than the interven-
tion was intended to help.
Table 7.2
1
8
8
Clarke
et al.
(2005)
Three-arm randomized trial
for adults with self-reported
depression. Participants were
randomized to one of three
groups: (1) treatment as
usual control group without
access to the ODIN website
(n = 100), (2) ODIN program
group with postcard remind-
ers (n = 75), and (3) ODIN
program group with tele-
phone reminders (n = 80).
Mental health Web site,
e-mail,
telephone
Examine the supple-
mental effects of
reminders on a
Web-based cognitive
therapy self-help pro-
gram for depression
(ODIN) among adults
with self-reported
depression.
Results showed overall
signifi cant relationship
between improved mental
state (reduced depression
rates) of patients sent
reminders compared to
the control group. There
was no signifi cant differ-
ence between methods
by which reminders were
sent.
DeBusk
et al.
(2004)
462 adults with heart fail-
ure were randomly assigned
(228 to intervention and 234
to usual care). The nurse
care management interven-
tion included coordination
of care across disciplines,
patient and caregiver educa-
tion, enhancement of self-
management skills, effective
follow-up, and guidelines-
based medications for heart
failure. Time to fi rst rehospi-
talization for heart failure or
for any cause and time to a
combined end point of fi rst
rehospitalization, emergency
department visit, or death
were the primary outcome
measures.
Cardiovascular
disease
Telephone To compare the ef-
fects of a telephone-
mediated nurse care
management program
for heart failure versus
routine care on rate of
rehospitalization for
heart failure and for all
causes over a 1-year
period.
No signifi cant differences
were found on rate of
fi rst rehospitalization for
heart failure between the
intervention and routine
care conditions. Further-
more, rate of all-cause
rehospitalization did not
signifi cantly differentiate
between the groups.
(continued )
1
8
9
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Devineni &
Blanchard
(2005)
Chronic headache sufferers
were randomized to a Web-
based intervention involving
minimal therapist e-mail
contact (n = 39) and to a
symptom monitoring waitlist
control group (n = 47).
Chronic pain
(tension/headache)
Web site, e-
mail, print
Evaluate an Internet-
delivered behavioral
regimen composed of
progressive relaxation,
limited biofeedback
with autogenic train-
ing, and stress man-
agement versus a
symptom monitoring
waitlist control.
Treatment led to a signifi –
cantly greater decrease
in headache activity and
headache-related disabi-
lity than symptom
monitoring alone. Attri-
tion rates were typical of
behavioral self-help pro-
grams (38.1% and 64.8%
during treatment and at
2 months post treatment).
DeWalt
et al.
(2006)
127 heart failure patients
taking furosemide were
randomly assigned to either
telephone-based self-man-
agement training (n = 62)
or routine care (n = 65).
Self-care training consisted
of daily weight measurement,
diuretic dose self-adjustment,
and symptom recognition
and response. Picture-based
educational materials, and
telephone follow-up were pro-
vided to reinforce adherence.
Control patients received a
generic heart failure brochure
and usual care.
Cardiovascular
disease
Telephone To perform a ran-
domized controlled
trial comparing a
telephone-based self-
management training
program versus usual
care on hospitaliza-
tion rates and health
quality of life of heart
failure patients with
low literacy skills.
Patients in the telephone-
based self-management
group had a lower rate of
hospitalization or death
than patients in the
control group. At
12 months, a signifi cantly
larger number of patients
in the intervention group
monitored their weight
daily than in the routine
care group. In contrast,
no signifi cant difference
in heart failure–related
quality of life was found
between the two groups at
the 12-month follow-up.
Table 7.21
9
0
Dietrich
et al.
(2004)
405 outpatients were ran-
domly assigned to either
telephone-based interven-
tion (n = 224) or routine
depression care (n = 181).
Intervention included tele-
phone-based for increasing
adherence to depression
treatment, and teaching of
self-management practices
such as exercise or engaging
in social activities. In addi-
tion, treating mental health
clinicians at participating
primary care practices
received ongoing progress
reports over the telephone.
Usual care participants
received routine outpatient
treatment from outpatient
clinicians. The latter were
administered a 45–60 min-
ute program on depression
diagnosis and assessment
of suicidal thoughts prior to
the initiation of the study.
Mental health Telephone To compare the
effects of a telephone-
mediated self-man-
agement intervention
versus usual care on
targeted processes
for management of
depression and out-
comes at 6 months.
Although mean depres-
sion scores declined
among patients in both
groups, the decline was
signifi cantly greater in
intervention patients at
both the 3- and 6-month
follow-ups. At 6 months,
37% of intervention pa-
tients showed remission
compared with 27% for
usual care patients. In re-
gard to targeted treatment
processes, the interven-
tion clinicians signifi –
cantly more often asked
patients about suicidal
thoughts, offered edu-
cational materials, and
assisted in setting self-
management goals, than
usual care patients. Of in-
tervention patients, 90%
rated their depression
care as good or excellent
at 6 months compared
with 75% of usual care
patients.
(continued )1
9
1
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Dougherty
et al.
(2005)
168 individuals who re-
ceived ICD implantation for
either a fi rst sudden cardiac
arrest or life-threatening
arrhythmia were randomly
assigned to either tele-
phone-based psychoeduca-
tion intervention (n = 85)
or usual care (n = 83).
Measures were obtained at
baseline, 6 and 12 months
post hospitalization.
Cardiovascular
disease
Telephone To compare the ben-
efi ts of a structured,
8-week educational
telephone intervention
versus usual care on
physical functioning,
psychological adjust-
ment, self-effi cacy,
and health care utiliza-
tion 12 months after
ICD implantation.
The telephone-based,
psychoeducation inter-
vention group showed
signifi cantly greater im-
provement on physical
concerns, anxiety, fear of
dying, self-confi dence,
and knowledge in manag-
ing ICD recovery than the
usual care control group
at both 6 and 12 months
after ICD implantation. In
contrast, no statistically
signifi cant differences
between the groups were
found on total outpatient
visits, hospitalizations, or
ER visits for both assess-
ment intervals.
Table 7.2
1
9
2
Dunagan
et al.
(2005)
151 patients hospitalized
with heart failure (HF) were
randomized to scheduled
telephone calls by specially
trained nurses promoting
self-management and guide-
line-based therapy plus a
written education packet (n
= 76) or to usual care (n =
75) . Nurses also screened
patients HF exacerbations,
which they managed with
supplemental diuretics or
by contacting the primary
physician for instructions.
Usual care participants
received a written educa-
tional packet describing
the causes of HF, the basic
principles of treatment,
their role in routine care and
monitoring of their condi-
tion, and strategies for man-
aging a HF exacerbation.
Cardiovascular
disease
Telephone To compare the impact
of a nurse-adminis-
tered, telephone-based
disease management
program versus usual
care for adults with
health failure on need
for hospital-based
care, mortality, func-
tional status, and sat-
isfaction with care.
The intervention group
had signifi cantly fewer
hospital admissions and
total hospital days, and
lower hospital costs dur-
ing the fi rst 6 months of
the program than usual
care patients. None of
the differences remained
statistically signifi cant
at the 1-year follow-up.
There were modest but
statistically signifi cant
changes in physical func-
tioning scores on both the
SF-12 and the Minnesota
Living with Heart Failure
Questionnaire (MLHFQ)
at 6 months, but not at
12 months. Changes
in scores for the SF-12
mental functioning scale,
MLHFQ emotional health
subscale, and BDI were
not signifi cantly different
at 6 or 12 months.
(continued )
1
9
3
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Emmons
et al.
(2005)
796 participants were ran-
domly assigned to either a
peer-delivered telephone
counseling intervention
(PC; n = 398) or a self-help
intervention (SH; n = 398).
PC participants were as-
signed a peer counselor who
was trained in motivational
interviewing principles; a
maximum of six calls were
provided within a 7-month
period. SH participants
received a letter from the
study physicians highlight-
ing the importance of smok-
ing cessation to reduce the
risk of secondary cancers,
and a cessation manual,
“Clearing the Air: How to
Quit Smoking and Quit for
Keeps.”
Cancer Telephone
and postal
service mail
To compare the effects
of a peer-based tele-
phone counseling ver-
sus self-help on smok-
ing among childhood
cancer survivors.
The quit rate was sig-
nifi cantly higher in the
telephone-based PC group
compared with the SH
group at both the 8- and
12-month follow-ups.
Controlling for baseline
self-effi cacy and readi-
ness to change, the PC
group was twice as likely
to quit smoking than
the SH group. The total
intervention delivery cost
per person was $298.17
for the PC group, and
$1.25 for the SH group.
The incremental cost-
effectiveness of the PC
group compared with the
SH control group [(CostPC
– CostSH)/(Quit ratePC –
Quit rateSH)] was $5,371
per additional quit at 12
months.
Table 7.2
1
9
4
Farmer
et al.
(2005)
93 young adults with Type
1 diabetes were randomly
assigned to either: (a)
real-time graphical phone-
based feedback plus nurse-
initiated support and prob-
lem solving (n = 47) or (b)
minimal patient feedback
consisting of a graphical
time series of blood glucose
readings for the previous 24
hours (n = 46). The length
of both intervention and
control conditions was
9 months.
Diabetes General
packet radio
system,
mobile phone
(Motorola
T720i), blood
glucose
monitor (One
Touch Ultra)
To compare the effects
of a mobile phone–
based telemedicine
system, including real-
time feedback, phone
diary recordings, and
nurse-initiated support
and problem solving
versus a minimal feed-
back control condition
on glycemic control.
There was a reduction in
HbA1c in the interven-
tion group after 9 months
from 9.2% to 8.6% and a
reduction in HbA1c in the
control group from 9.3
to 8.9. This difference in
change in HbA1c between
groups was not statisti-
cally signifi cant.
(continued )
1
9
5
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Glasgow
et al.
(2002)
320 adults with Type 2
diabetes were randomly as-
signed to 1 of 4 conditions
(Note: telephone follow-up =
TF; community resources
utilization component = CR):
(1) TF (n = 80), (2) TF + CR
(n = 80), (3) CR (n = 80) or
(4) no CR + no TF (n = 80).
The TF condition received
telephone-based, tailored
support for behavior changes
and problem- solving train-
ing to facilitate dietary
self-care. The CR group
received information on
community resources (e.g.,
eating at local restaurants
and grocery shopping). The
TF + CR group received a
combination of TF and CR
treatments. The no CR + no
TF group received a general
pamphlet about low-fat eat-
ing and usual care from their
physicians. Outcome mea-
sures were assessed at base-
line and 12-months later.
Diabetes Telephone,
offi ce-based
multimedia
touchscreen
computer
To evaluate the in-
cremental effects of
adding TF versus a CR
utilization component
to a computer-assisted
dietary goal-setting
intervention for Type 2
diabetes patients.
All conditions showed
signifi cant improvement
from baseline to the
12-month follow-up
across behavioral (e.g.,
Kristal fat and fi ber be-
havioral scale), biological
(e.g., lipid ratio, HbA1C),
and psychosocial (e.g.,
quality of life, self-effi –
cacy) measures. However,
participants who received
TF (i.e., TF and TF +
CR) showed signifi cantly
greater improvement on
lipid ratio than the CR
and no TF + no CR partic-
ipants. In contrast, the TF
conditions made signifi –
cantly lower improvement
on use of community re-
sources than the CR and
no TF + no CR groups.
Table 7.21
9
6
Glasgow
et al.
(2003)
Randomized trial with Type
2 diabetes patients; All
participants (n = 320) had
access to a basic nutrition
information Web site, with
one group receiving addi-
tional tailored self-manage-
ment training via mediated
contact with experts and the
other receiving additional
online social support. Study
assessed multiple measures
within each of three differ-
ent domains: behavioral,
biological, and psychosocial
outcomes after 10 months
exposure to the intervention.
(a) Information only condi-
tion (basic Web site) n = 80,
(b) Web site with telephone
support n = 80, (c) Web site
with community support n =
80, (d), Combined condition
n = 80.
Diabetes Web site, e-
mail, chat,
discussion
group, print
Evaluate incre-
mental effects of
adding (1) tailored
self-management
training or (2) peer
support components
to a basic Internet-
based, information-
focused comparison
intervention.
All conditions signifi –
cantly improved from
baseline on behavioral,
psychosocial, and some
biological outcomes; but
there were few differences
between conditions. Total
cholesterol was lowest in
the tailored self-manage-
ment condition. There
were diffi culties in main-
taining usage over time
and additions of tailored
self-management and
peer-support components
generally did not signifi –
cantly improve results.
(continued )
1
9
7
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Howells et
al. (2002)
91 young people with Type
1 diabetes were randomly
assigned to continued rou-
tine managed plus negoti-
ated telephone support
(NTS) (n = 31), annual
clinic with NTS (n = 29), or
continued routine manage-
ment (n = 31).
Diabetes Telephone To compare the effects
of an NTS plus routine
care versus annual
clinic plus NTS versus
routine care on HbA1c
levels, self-effi cacy,
barriers to adherence,
problem solving, and
diabetes knowledge
in young people with
Type 1 diabetes.
Self-effi cacy for diabe-
tes self-management
was found to increase
signifi cantly in the
combined intervention
group compared with
the routine management
control from baseline to
the 1-year assessment.
Over the year, the mean
HbA1c increased signifi –
cantly (8.6%–9.0%). The
deterioration in HbA1c
was observed across the
groups. NTS with or with-
out CR did not improve
overall glycaemic control.
Note that no attempt was
made to intensify insulin
therapy. Normalization of
glycaemia, while the goal,
was approached by using
twice-daily regimens. The
NTS sessions were de-
signed to be driven by the
young person.
Table 7.2
1
9
8
Hunkeler
et al.
(2006)
1,801 patients were ran-
domly assigned to either a
12-month collaborative care
intervention (IMPACT; n =
906) or usual care for de-
pression (n = 895). Partici-
pants in the IMPACT arm re-
ceived an initial face-to-face
visit with a depression care
manager, followed by 12
monthly telephone sessions
focusing on problem solving
and relapse prevention. The
usual care group included
antidepressant medication,
counseling by the doctor,
and referral to specialty
mental health care.
Mental health Telephone To determine the long-
term effectiveness
of collaborative care
management for de-
pression in late life.
Across the 12-, 18-, and
24-month follow-up evalu-
ations, IMPACT patients
showed signifi cantly higher
levels of improvement on
depression (SCL-20), qual-
ity of life (SF-12), physical
functioning (PCS-12), and
satisfaction with care than
their control group coun-
terparts. Only overall func-
tional impairment failed to
differentiate between the
two groups at the
24-month follow-up.
IMPACT patients also re-
ported signifi cantly greater
confi dence in managing
their depression (self-
effi cacy) at 24 months
than control participants.
Jan et al.
(2007)
Two-group randomized con-
trolled trial. Asthma patients
were randomized to a physi-
cian-managed online interac-
tive asthma monitoring tool
treatment group (n = 99) or
a usual care control group
receiving a traditional asthma
care plan consisting of a
written asthma diary supple-
mented with instructions for
self-management (n = 97).
Asthma Web-based
asthma moni-
toring system,
e-journal,
telephone,
e-mail, print
diaries
Determine whether
the addition of a Web-
based multimedia
asthma educational
and monitoring pro-
gram to a traditional
clinic-based patient
educational pro-
gram would improve
children’s and caregiv-
ers’ management of
asthma symptoms.
Intervention group de-
creased nighttime and
daytime symptoms; im-
proved morning and night
PEF; increased adherence
rates (p < 0.05); improved
well-controlled rates; im-
proved knowledge regard-
ing self-management; and
improved quality of life
when compared with con-
ventional management.
(continued )
1
9
9
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Joseph
et al.
(2007)
Two-arm randomized con-
trolled trial. High school
students with asthma were
randomized to a tailored
Web site (treatment; n =
162) or to a generic asthma
Web site (control; n = 152).
Asthma Web site,
expert
coordinator
Evaluate a multimedia,
Web-based asthma
management program
to specifi cally target
urban high school
students.
At 12 months, interven-
tion students demon-
strated more positive
behaviors, reported fewer
symptom days, symp-
tom nights, school days
missed, restricted-activity
days, and hospitalizations
for asthma compared to
the control students.
Table 7.2
2
0
0
Karlson
et al.
(2004)
122 systemic lupus ery-
thematosus (SLE) patients
were randomly assigned to a
telephone-based couples in-
tervention (n = 64) or atten-
tion placebo group (n = 58).
Experimental group patients
and their partners received
an intervention for enhanc-
ing self-effi cacy, couples
communication about SLE,
social support, and problem
solving, in a 1-hour session
with a nurse educator fol-
lowed by monthly telephone
counseling for 6 months.
Control patients and their
partners received attention
placebo, including a
45-minute video presenta-
tion about lupus, and monthly
telephone calls. Measures of
physical and mental health
status, disease activity, and
psychosocial factors were
collected at baseline,
6 months, and 12 months.
Other chronic condi-
tions (lupus)
Telephone
plus video
presentations
To compare the effects
of telephone-based
intervention versus at-
tention placebo control
group on patient self-
effi cacy and partner
support in managing
SLE.
Adjusting for baseline co-
variates, scores for couple
communication were
signifi cantly higher at
6 months, and scores for
self-effi cacy and global
mental health status were
signifi cantly higher at
12 months in the experi-
mental group compared
with the control group,
and the mean score for
global physical function
was higher by 7 points,
which was a clinically
meaningful change. The
mean score for fatigue
was also signifi cantly
lower in the experimental
group than in the control
group. SLE disease activ-
ity was unchanged by this
intervention.
(continued )
2
0
1
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Khan et al.
(2004)
The parents were random-
ized to receive either stan-
dard care (155 children) or
standard care plus educa-
tion by telephone (155 chil-
dren) from a trained asthma
educator. The conceptual
framework was theory of
empowerment with rein-
forcement by telephone re-
minder to improve the skills
of parents to recognize and
avoid triggers, to use written
asthma action plans, and
to seek help appropriately.
Symptoms, parental asthma
knowledge, parental quality
of life, and use of asthma
action plans and preventer
therapy were collected at
baseline and 6 months later.
The primary measure was
days of wheeze in last
3 months.
Asthma Telephone To compare the effects
of asthma education
by telephone versus
routine care on asthma
symptoms, use of
written asthma action
plans, increase regular
use of preventer ther-
apy, increase parental
asthma knowledge and
improve parental qual-
ity of life.
At follow-up, the interven-
tion group children were
signifi cantly more likely
than controls to possess
a written asthma action
plan. Possession of ac-
tion plans increased from
baseline in the interven-
tion group but tended to
decrease in the control
group. Use of action
plans was greater in the
intervention group but
decreased from baseline
in both groups. Both
intervention and control
groups showed signifi cant
decreases in asthma
symptoms.
Table 7.2
2
0
2
Kim & Oh
(2003)
20 patients were randomly
assigned to an interven-
tion group and 16 to a
control group. The 12-week
telephone intervention
consisted of education
and reinforcement of diet,
exercise, medication adjust-
ment, as well as frequent
self-monitoring of blood
glucose levels. Telephone
intervention was performed
twice per week for the fi rst
month and then weekly for
the second and third month.
Participants were requested
to write self-management
logs including blood glucose
levels, diet, and an exercise
diary. The control group
received routine care con-
sisting of one offi ce visit to
a physician. The HbA1c and
diabetes adherence were
measured before and after
the intervention.
Diabetes Telephone To compare the effects
of nurse telephone-
based intervention on
glycosylated haemoglo-
bin (HbA1c) levels and
adherence to diabetes
control recommenda-
tions for Type 2 dia-
betic adults.
Patients in the interven-
tion group showed sig-
nifi cantly greater improve-
ment in mean HbA1c
levels than control group
participants. The inter-
vention group exhibited
greater diet and blood
glucose testing adherence
than the control group.
(continued )
2
0
3
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Kim et al.
(2007)
Two-arm randomized
controlled trial. Diabetes
patients in the intervention
group used the diabetes
monitoring system for 12
weeks without any outpa-
tient visits (n = 35). Pa-
tients in the control group
were given glucometers and
received their usual out-
patient management from
their physicians (n = 36).
Diabetes Web site,
cellphone,
SMS, glu-
cometer,
pedometer
Evaluate effectiveness
of Web-based diabetes
management system
with short messaging
system on diabetes
self-management.
At 12 weeks, the interven-
tion group demonstrated
signifi cant decreases in
body weight, A1C levels,
fasting, and postprandial
glucose levels compared to
the control group. Total cho-
lesterol, triglyceride, and
LDL and HDL cholesterol
levels in the intervention
group were not signifi cantly
different compared with
those in the control group.
Klein,
Richards,
& Austin
(2005)
Subjects with panic disorder
were randomized to one of
three groups: using a block
design to: Internet-based
treatment (n = 19), treatment
with a self-help manual with
limited therapist assistance
(n = 18), or an Internet-based
information control (IC)
(n = 18) condition for 6
weeks. Internet subjects were
able to access therapist daily.
Mental health Web site, e-
mail, print,
telephone,
video, snail
mail
Evaluate effects of
Internet-based cogni-
tive behavioral panic
treatment (CBT)
(with e-mail contact),
therapist-assisted CBT
manual or informa-
tion-only control (both
with telephone con-
tact) on panic disorder
patients.
Internet treatment was
more successful than the
CBT manual in reducing
clinician-rated agorapho-
bia and number of physi-
cian visits. Attrition was
lower than other Internet
studies.
Table 7.2
2
0
4
Krein et al.
(2004)
246 poorly controlled Type
2 diabetes patients were
randomly assigned to either
telephone-based collabora-
tive case management (n =
123) or usual care plus edu-
cation materials (n = 123).
In the telephone-based,
case management interven-
tion nurse practitioners
monitored and coordinated
care, and engaged in col-
laborative goal setting (e.g.,
changing diet and exercise
routines). Control patients
received educational ma-
terials and usual care from
their primary care providers.
Outcome measures were
collected at baseline and
18 months after entry into
the study.
Mental health Telephone,
semiauto-
matic blood
pressure
monitor
device
To compare the effects
of a telephone-based,
collaborative case
management inter-
vention versus usual
care plus education
materials on glycemic
control, intermedi-
ate cardiovascular
outcomes (e.g., blood
pressure and lipid con-
trol), satisfaction with
care, and resource uti-
lization for adults with
poorly controlled Type
2 diabetes.
At the 18-month follow-
up, both case manage-
ment and control patients
showed poor glycemic
control. No signifi cant
group differences were
found in mean exit
HbA(1C) level. There was
also no evidence that
the intervention resulted
in improvements in low-
density lipoprotein choles-
terol level or blood pres-
sure control. Furthermore,
no difference in resource
utilization was obtained
between the groups on re-
source utilization between
study groups. Intervention
and control patients aver-
aged 0.5 hospitalizations
and six primary care out-
patient visits during the
study period. However,
intervention patients were
substantially more satis-
fi ed with their diabetes
care, with 82% rating
their providers as better
than average compared
with 64% of patients in
the control group.
(continued )
2
0
5
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Krishna
et al.
(2003)
Two-arm randomized con-
trolled study. Both groups
were exposed to a National
Asthma Education and
Prevention Program. The
intervention group received
self-management educa-
tion via an Internet-enabled
multimedia program (n =
119) while the control group
received printed and verbal
asthma education only (n =
127). Data were collected at
baseline, 3 months, and 12
months.
Asthma Web site,
online
games, print,
telephone
Evaluate effects of
supplementing con-
ventional asthma
care with interactive
multimedia education
on asthma knowledge
and self-management
of children and their
caregivers.
Children and caregivers
in the intervention group
increased their knowl-
edge and demonstrated
decreased asthma symp-
tom days from 81 to 51
days/year and emergency
room visits from 1.93 to
0.62 per year. Asthma
knowledge in 7–17 year
old children correlated
(r = 0.37) with fewer ur-
gent physician visits and
decreased use of rescue
medications (r = 0.30).
Kwon et al.
(2004)
Two-group randomized con-
trolled trial with diabetes
patients randomized to a Web-
based blood glucose moni-
toring system (IBGMS; n =
51) group or usual care con-
trol group (n = 50). Pre- and
postprandial blood glucose
readings were uploaded to
the Web site. Physicians re-
viewed data and responded
via Web postings.
Diabetes Web site, e-
mail, print
Investigate effective-
ness of an Internet-
based blood glucose
monitoring system
(IBGMS) on controlling
the changes in HbA1c
levels of Type 2 diabe-
tes patients.
There was a signifi cant
decrease in Hemoglobin
A1c at p < 0.001 in the
treatment group at
3-month follow-up. There
was also a differential re-
sponse between subjects
with initial A1c 7.0%.
Table 7.2
2
0
6
Lange
et al.
(2003)
Randomized controlled trial
of standardized treatment
of posttraumatic stress de-
livered through the Internet
compared to a wait-list
control.
Mental health Web site,
online risk
assessment
tool, medi-
ated contact
with expert
Compared symptoms
of posttraumatic stress
sufferers randomized
to a standardized
treatment of posttrau-
matic stress delivered
through the Interned
versus a wait-list
control.
Participants in treatment
group improved signifi –
cantly more than wait-list
controls. Decreases in
symptoms of posttraumatic
stress were statistically sig-
nifi cant. There was no re-
lapse at 6-week follow-up.
Treatment was a success
on all or most major points.
Logue
et al.
(2005)
665 overweight or obese men
and women from 15 primary
care sites were randomly as-
signed to either augmented
usual care (AUC) (n = 336)
consisting of dietary and ex-
ercise advice, prescriptions,
and three 24-hour dietary
recalls every 6 months,
or transtheoretical model-
chronic disease (TM-CD)
care (n = 329) composed of
AUC elements plus stage-of-
change (SOC) assessments
for fi ve target behaviors every
other month, mailed SOC
and target behavior-matched
workbooks, and monthly tele-
phone calls from a weight-
loss advisor. Weight change
was the primary outcome for
the 2-year study.
Other chronic condi-
tions (obesity)
Telephone To compare the effects
of a TM-CD telephone
and mailed assign-
ments intervention for
obesity versus AUC
on weight change in
adults with obesity.
Repeated measures analy-
ses showed nonsignifi cant
adjusted differences
between the AUC and
TM-CD groups for weight
change, waist circumfer-
ence, energy intake or
expenditure, blood pres-
sure, and blood lipids.
The pattern of change
over time suggested that
TM-CD participants were
trying harder to impact
target behaviors during
the fi rst 6 to 12 months
of the trial but relapsed
afterward. 60% of trial
participants maintained
their baseline weights for
18 to 24 months.
(continued )
2
0
7
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Lorig et al.
(2006)
Two-group randomized
trial with chronic disease
patients (heart, lung, or
Type 2 diabetes). Patients
participated in a small-
group Chronic Disease
Self-Management Program
(CDSMP) with or without an
interactive Web-based com-
ponent including references
and discussion groups on
chronic diseases, medica-
tion, and also illustrations of
suggested exercises. The ef-
fi cacy of the Internet-based
CDSMP was compared with
usual-care controls at
1 year. Treatment group
n = 457 Usual care n = 501
Chronic disease Web site, e-
mail, discus-
sion group,
print
Determine effi cacy
of an Internet-based
CDSMP in changing
health-related behav-
iors and improving
health statuses.
At 48 weeks, the inter-
vention group had sig-
nifi cant improvements in
health status compared
with usual care control
patients. The interven-
tion group had similar
results to the small-group
CDSMP participants.
Change in self-effi cacy at
6 months was found to
be associated with better
health status outcomes at
1 year.
Table 7.2
2
0
8
Maljanian
et al.
(2005)
Two-arm RCT with diabetes
comprehensive care versus
diabetes comprehensive
care plus telephone-based
follow-up The intervention
consisted of 12 weekly
phone calls to reinforce
education and self-man-
agement skills. The calls
included adherence with
self-management activities,
and attendance at MD offi ce
visits. Education focused
on glycemic control and
prevention of complications.
The initial clinic-based
diabetes management
program included three 4-
hour classes on the basics
of diabetes, nutrition and
exercise, the importance of
adherence to the American
Diabetes Association (ADA)
care standards, and collab-
orative care management.
Outcomes were evaluated at
3- and 12-month follow-ups.
Diabetes Telephone To assess the incre-
mental effects of an
intensive telephone
follow-up in a diabetes
disease management
program on improv-
ing glycemic control,
adherence with ADA
standards of care, and
health-related quality
of life (HRQOL).
Adherence to ADA stan-
dards of care, specifi –
cally annual eye exams,
physician foot exams,
foot self-exams, and
pneumonia vaccination,
were signifi cantly better
with the added telephone
intervention, but there
were no differences
between the groups on
glycemic control, HRQOL,
or patient satisfaction.
The additional telephone
intervention further im-
proved adherence to ADA
guidelines for self-care
and medical care but did
not affect glycemic con-
trol or HRQOL.
(continued )
2
0
9
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
McKay
et al.
(2002)
Randomized trial comparing
four conditions: Informa-
tion-Only Condition (IOC;
n = 33), Personalized Self-
Management Coach Condi-
tion (PMSCC; n = 30), Peer
Support Condition (PSC;
n = 37) and the Combined
Condition (CC; n = 33).
Measures included demo-
graphics, Web site uses,
glycated hemoglobin, eat-
ing behaviors, and mental
health status.
Diabetes Web site, e-
mail, discus-
sion group,
online sup-
port group,
chat, medi-
ated contact
with expert
Evaluate 12-week in-
dividual and combined
effects of diabetes
self-management
instruction and
peer- support in the
Internet-based Diabe-
tes Network (D-Net)
on the following out-
comes: physiologic,
behavioral, mental
health, and Web site
usage.
Article is a 3-month
follow-up report on the
D-Net project on fi rst 160
patients recruited for the
study. Improvement was
observed on all measures
but there were no signifi –
cant differences between
conditions.
Table 7.2
2
1
0
Middleton
et al.
(2005)
Patients undergoing carotid
endarterectomy (CEA)
(N = 133) were randomized
to either the intervention
(n = 66) or control group
(n = 67). The intervention
consisted of telephone liai-
son between the participant
and a RN at 2, 6, and 12
weeks following CEA, com-
bined with education about
stroke risk-factor manage-
ment and structured liaison
with the patient’s surgeon
and referring general practi-
tioner. The control group did
not receive any RN postop-
erative telephone contact,
but their general practi-
tioners were informed that
their patient had undergone
a CEA and given details of
their immediate postopera-
tive recovery 2 weeks follow-
ing the procedure.
Cardiovascular
disease
Telephone To compare the
short-term impact of
nursing-led, telephone-
mediated care for
patients after CEA ver-
sus routine treatment
following CEA.
The telephone-based
postdischarge interven-
tion showed signifi cantly
greater improvements
on patient knowledge of
stroke warning signs, pa-
tient self-reported changes
to improve lifestyle, and
diet modifi cation than
the routine care control
group from baseline to
the 3-month follow-up.
In addition, statistically
signifi cant improvements
were found from baseline
to follow-up for the inter-
vention group ratings of
their general health status
and suffi cient time and
sessions per week spent
in physical activity, as
compared to control par-
ticipants who showed no
change over time.
(continued )
2
1
1
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Mishel et
al. (2005)
Breast cancer survivors
were randomly assigned to
either the intervention or
usual care control condi-
tion. The intervention was
delivered during four weekly
telephone sessions, focusing
cognitive-behavioral strate-
gies to manage uncertainty
about recurrence, and a
self-help manual designed
to help women understand
and manage long-term
treatment side effects and
other symptoms. Treatment
outcome data on uncertainty
management were gathered
at preintervention and a 10-
month follow-up.
Cancer Telephone To test the effi cacy of a
theoretically based un-
certainty management
intervention delivered
to older long-term
breast cancer survivors
versus usual care on
knowledge of long-
term treatment effects,
problem solving, social
support, cognitive
coping strategies, and
emotional distress.
The treatment group had
an increase in cognitive
reframing while the control
group did not change from
baseline to 10 months.
This difference was most
pronounced for African
American women where
the treatment group in-
creased and the control
group decreased between
baseline and 10 months.
There was no difference
between groups for prob-
lem solving. While all the
groups increased in cancer
knowledge, the treatment
group had the greatest
increase from baseline to
10 months. There was no
difference between groups
for problem solving. Fol-
low-up analyses revealed
that there was a signifi cant
treatment by ethnicity
increase in use of coping
self-statements. There was
Table 7.2
2
1
2
a signifi cant treatment
by ethnicity effect for the
catastrophizing subscale
with a decrease from
baseline to 10 months
post baseline for African
American women in the
treatment group and no
change in their control
group over time.
Napolitano
et al.
(2002)
81 adults awaiting lung
transplantation were ran-
domly assigned to either
telephone-based cognitive-
behavioral (CB) intervention
(n = 41) or usual care (n =
40). CB treatment included
education about stress and
health, specifi c coping
techniques (e.g., relaxation
training, problem solving,
and calming self-statements),
and relapse prevention.
Usual care included clinic
visits with transplant team
pulmonologists and nurse
coordinators. Health-related
quality of life (both gen-
eral and disease-specifi c),
general psychological well-
being, and social support
were assessed at baseline
and 8 weeks following entry
in the study.
Other chronic condi-
tions (lung)
Telephone To compare the effi –
cacy of an 8-week, tai-
lored, telephone-based
CB intervention versus
usual care on mea-
sures of quality of life
and general well-being
for individuals awaiting
lung transplantation.
Adjusting for pretreat-
ment baseline scores,
age, gender, and time
waiting on the transplant
list, the telephone-based
CB group reported greater
general well-being, bet-
ter general quality of life,
better disease-specifi c
quality of life, and higher
levels of social support
than participants in the
usual care group.
(continued )
2
1
3
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Nunn et al.
(2006)
123 children with Type 1
diabetes, ages 3–16 years,
were randomly assigned to
either an intervention group
receiving normal care and
bimonthly telephone sup-
port (n = 63) or to a control
group receiving normal
care only (n = 60). The
intervention group received
bimonthly 15–30 minute,
telephone-based educa-
tion and support sessions
for 7 months. The primary
outcome was change in the
HbA1c levels. Admission
rates and changes in diabe-
tes knowledge, psychologi-
cal parameters, compliance,
and patient perception also
were measured.
Diabetes Telephone To compare the effects
of telephone interven-
tion from a diabetes
educator plus routine
care versus routine
care only on improve-
ments in childrens’
hemoglobin A1c
(HbA1c) level, hospital
admissions, diabetes
knowledge, compli-
ance, and psychologi-
cal well-being.
There were no signifi cant
differences between
the intervention and
the control groups on
improvement for HbA1c
levels from baseline to
posttreatment. Both
groups showed equivalent
gains on this measure
over time. Furthermore,
there were no signifi cant
improvements in diabetes
knowledge, compliance,
or psychological function
between and within the
two groups.
Table 7.2
2
1
4
Owen et al.
(2005)
Two-group randomized trial
with early-stage breast can-
cer patients. Participants
were randomized into either
a small online coping group
(n = 32) or a waiting-list
control condition (n = 30).
Cancer Web site,
discussion
group, on-
line support
group, e-mail
This 12-week study ex-
amined the effects and
potential mechanisms
of action of a self-
guided, Internet-based
coping-skills training
group on quality of life
outcomes in women
with early-stage breast
cancer.
Results were mixed: no
signifi cant main effects
were observed for the
treatment on primary de-
pendent variables. How-
ever, there was greater
improvement in emotional
well-being for treatment
relative to control par-
ticipants, and effect sizes
for overall quality of life,
emotional well-being, and
breast-specifi c concerns
were modest. In addi-
tion, participants with low
health status at the be-
ginning of the study who
were provided with access
to the treatment showed
signifi cantly greater
improvement.
(continued )
2
1
5
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Park et al.
(2003)
Adult heart transplant
candidates were randomly
assigned to a bibliotherapy
plus telephone-based,
cognitive-behavioral weight-
loss program (n = 21) or
bibliotherapy only (n = 22).
In the telephone-based
condition, a bachelor’s-
level clinician delivered
intervention in 12 15–20
minute sessions focusing
on stimulus and impulse
control, problem solving, as-
sertiveness, positive think-
ing, and reinforcement. In
the bibliotherapy condition,
participants received a 20-
lesson manual focusing on
the same skills as the tele-
phone-based cognitive-be-
havioral intervention group.
Primary outcome measures
were assessed at baseline
and 3 months following the
onset of treatment.
Cardiovascular
disease
Telephone To assess the relative
effectiveness of a bib-
liotherapy weight-loss
program or a biblio-
therapy plus telephone
contact weight-loss
program on weight loss
for heart transplant
candidates.
An intent-to-treat analy-
sis showed a signifi cant
weight loss at post-
treatment for the entire
sample. Within-group
analyses indicated that a
signifi cant weight change
in the telephone group,
but not the bibliotherapy-
only group. Participants
in the telephone group
returned more 3-day
food diaries and self-
monitoring postcards,
with pounds lost signifi –
cantly correlated with the
number of completed
self-monitoring postcards.
Table 7.2
2
1
6
Pinto et al.
(2005)
86 sedentary women who
had completed treatment
for stage 0 to II breast
cancer were randomly as-
signed to a physical activity
program (PA) (n = 43) or
contact control group (n =
43). Participants in the PA
group received 12 weeks
of PA counseling (based on
the Transtheoretical Model)
delivered via telephone, as
well as weekly exercise tip
sheets. Assessments were
conducted at baseline, after
treatment (12 weeks), and
6 and 9 month after base-
line follow-ups. The control
participants were asked
not to change their current
level of activity during the
12 weeks. They received
a weekly phone call from
research staff for 12 weeks.
These women received the
same cancer survivorship tip
sheets as the PA group.
Cancer Telephone To compare the effects
of a home-based mod-
erate-intensity tele-
phone-based PA versus
contact control on PA,
fi tness, mood, physical
symptoms (e.g., fa-
tigue and weight gain),
and body esteem in
breast cancer patients.
The telephone-based PA
group reported signifi –
cantly more total minutes
of PA, more minutes of
moderate-intensity PA,
and higher energy ex-
penditure per week than
controls. The PA group
also outperformed con-
trols on a fi eld test of fi t-
ness. Changes in PA were
not refl ected in objective
activity monitoring. The
PA group was more likely
than controls to progress
in motivational readiness
for PA and to meet PA
guidelines. No signifi cant
group differences were
found in body mass
index and percent body
fat. Posttreatment group
comparisons revealed
signifi cant improvements
in vigor and a reduction in
fatigue in the PA group.
(continued )
2
1
7
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Riegel
et al.
(2006)
Hospitalized Hispanic par-
ticipants with chronic heart
failure (N = 134) were ran-
domized to a telephone case
management emphasizing
patient self-care (n = 69)
or usual care (n = 65). Bi-
lingual/bicultural Mexican-
American registered nurses
provided 6 months of tele-
phone case management.
Data on hospitalizations
were collected from auto-
mated systems at 1, 3, and
6 months after the index
hospital discharge. Health-
related quality of life and
depression were measured
by self-report at baseline, 3,
and 6 months.
Cardiovascular
disease
Telephone Compared the impact
of telephone case
management (n = 69)
versus usual care (n =
65) in decreasing hos-
pitalizations and im-
proving health-related
quality of life and de-
pression in Hispanics
of Mexican origin with
chronic heart failure.
Intention to treat analysis
was used. No signifi cant
between-group differ-
ences were found in heart
failure (HF) hospitaliza-
tions. In addition, no sig-
nifi cant group differences
were found in HF read-
mission rates, HF days in
the hospital, HF cost of
care, all-cause hospital-
izations or cost, mortality,
health-related quality of
life, and depression.
Table 7.2
2
1
8
Ries et al.
(2003)
172 patients with chronic
lung disease were randomly
assigned to a 12-month
maintenance intervention
with weekly telephone con-
tacts and monthly super-
vised reinforcement sessions
(n = 87) or standard care
(n = 85). Weekly telephone
sessions elicited data on
compliance with home treat-
ment, information about
recent health problems, as
well as advice and assis-
tance. Supervised reinforce-
ment included respiratory
care instruction, exercise,
and support. Standard care
included care by the primary
provider, a written home
treatment plan, and monthly
group meetings. Measures
were obtained before and
after pulmonary rehabilita-
tion and 6, 12, and
24 months later.
Other chronic condi-
tions (lung)
Telephone To compare the ef-
fects of a combined
telephone and face-to-
face pulmonary reha-
bilitation maintenance
program versus routine
care on physiologic
and psychosocial out-
comes in adults with
chronic lung disease.
During the 12-month
intervention, exercise tol-
erance and overall health
status were signifi cantly
better maintained in the
intervention group than in
the usual care condition.
Intervention group par-
ticipants also had signifi –
cantly fewer hospital days
than usual care patients
following pulmonary re-
habilitation. In contrast,
no group differences for
other measures of pulmo-
nary function, dyspnea,
self-effi cacy, generic and
disease-specifi c quality
of life, and health care
use at the 12-month as-
sessment phase. By 24
months, there were no
signifi cant group differ-
ences. Patients returned
to levels that approached,
but remained above pre-
rehabilitation measures.
(continued )
2
1
9
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Ritterband
et al.
(2003)
Two-group randomized con-
trol trial. Children were ran-
domized to Internet inter-
vention group (Web; n = 12)
or no Internet intervention
group (no-Web; n = 12).
Other chronic condi-
tions (encopresis)
Web site,
face-to-face
contact with
expert
Evaluate the ben-
efi ts of enhanced
toilet training delivered
through the Internet
for children with
encopresis.
Web subjects demonstrated
greater improvements in
reduced fecal soiling, in-
creased defecation in toilet,
and increased unprompted
trips to the toilet p < 0.02.
Treatment was a success
on all or most major points.
Rodrigue
et al.
(2005)
35 adults were randomized
to telephone-based Quality-
of-Life Therapy (QOLT; n
= 17) or telephone-based
supportive therapy (ST;
n = 18). QOL, mood and
social intimacy assessments
were conducted at baseline
and at 1 and 3 months after
treatment. QOLT focused on
problem-solving training with
information and specifi c sug-
gestions tailored to the identi-
fi ed concerns of the patient.
ST provided patients with
information about the trans-
plant experience, listening
actively to their concerns and
worries, and promoting the
use of other support systems.
Other chronic condi-
tions (lung)
Telephone To compare the ef-
fects of telephone-
based QOLT versus
telephone-based
social support on QOL,
mood disturbance,
and social intimacy in
adults awaiting lung
transplantation.
When compared to ST pa-
tients, QOLT patients had
signifi cantly higher QOL
scores at the 1- and 3-
month assessments, lower
mood disturbance scores
at the 3-month assess-
ment, and higher social
intimacy scores at the
1-month assessment.
Table 7.22
2
0
Rollman
et al.
(2005)
191 individuals with panic
and/or generalized anxiety
disorder were randomly
assigned to a telephone-
based care management
intervention (n = 116) or
to usual care (n = 75). For
the telephone intervention
group, two trained care
managers provided psy-
choeducation, monitored
treatment responses, and
informed physicians of their
progress via an electronic
medical record system. The
usual care group received a
disorder-specifi c brochure
on their anxiety diagnosis
plus routine care from their
physicians.
Mental health Telephone To examine whether
telephone-based col-
laborative care for
panic and general-
ized anxiety disorders
improves clinical and
functional outcomes
more than the usual
care provided by pri-
mary care physicians.
At the 12-month follow-
up, the telephone inter-
vention group reported
signifi cantly greater
improvements on anxiety,
depressive symptoms,
and mental health-
related quality of life
than usual care patients.
In addition, intervention
participants made larger
improvements relative to
baseline in hours worked
per week and fewer work
days absent in the past
month than usual care
participants.
(continued )
2
2
1
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Rotheram-
Borus et
al. (2004)
Young people living with
HIV (YPLH) participants
were randomly assigned to
a 3-module intervention
totaling 18 sessions de-
livered by telephone (n =
59), in person (n = 61),
or a delayed-intervention
condition (n = 55). Similar
across intervention delivery
format (in- person or tele-
phone sessions), 3 modules
of 6 sessions each focused
on a different target be-
havior: improving physical
health, reducing sexual and
substance use acts, and
improving mental health.
Other chronic condi-
tions (HIV)
Telephone To compare the
cost-effectiveness of
individual in-person
versus individual
telephone delivery
self-management
intervention versus a
delayed control group
for YPLH.
The total cost of the
in-person intervention
for the 3 modules was
$3,500 per participant,
which was higher than the
cost of $2,692 per par-
ticipant for the telephone
intervention. The excess
cost of traveling time and
expenses for in-person
sessions accounted for
this difference. In addi-
tion, intention-to-treat
analyses found that the
in-person intervention
resulted in a signifi cantly
higher proportion of
sexual acts protected by
condoms overall and with
HIV-seronegative partners.
The in-person group sig-
nifi cantly increased their
proportion of protected
sexual acts compared
with the delayed group
over time. The proportion
Table 7.2
2
2
2
of protected sexual acts
in the telephone group
was not signifi cantly dif-
ferent from that in the de-
layed or in the in-person
intervention over time.
Simon
et al.
(2004)
600 primary care patients
beginning antidepressant
treatment for depression
were randomly assigned to
either usual primary care (n
= 195); usual care plus a
telephone care management
program including at least
three outreach calls, feed-
back to the treating physi-
cian, and care coordination
(n = 207); usual care plus
care management integrated
with a structured 8-session
cognitive-behavioral therapy
program delivered by tele-
phone (n = 198).
Mental health Telephone To compare telephone
care management
versus telephone care
management plus tele-
phone psychotherapy
versus routine depres-
sion care on changes
in depression severity
and patient-rated im-
provement on depres-
sive symptoms.
Compared with usual care,
the telephone psychothe-
rapy intervention led
to lower mean Hopkins
Symptom Checklist De-
pression Scale depression
scores, a higher proportion
of patients reporting that
depression was “much
improved,” and a higher
proportion of patients “very
satisfi ed” with depression
treatment. The telephone
care management program
had smaller effects on
patient-rated improvement
and satisfaction than the
telephone psychotherapy
intervention, but these
were nonetheless statisti-
cally signifi cant. Note,
however, effects on mean
depression scores did not
differentiate signifi cantly
between the telephone care
management and routine
depression care groups.
(continued )
2
2
3
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Sisk et al.
(2006)
406 adults who met diag-
nostic criteria for systolic
dysfunction were randomly
assigned to either a tele-
phone-based education and
self-management interven-
tion (n = 203) or usual
care (n = 203). During the
12-month intervention,
bilingual nurses counseled
patients on diet, medica-
tion adherence, and self-
management of symptoms
through an initial visit and
regularly scheduled follow-
up telephone calls. Usual
care patients received fed-
eral consumer guidelines for
managing systolic dysfunc-
tion but no other interven-
tion apart from routine
medical care.
Cardiovascular
disease
Telephone To compare the effects
of a nurse-led inter-
vention focused on
specifi c management
problems versus usual
care among ethnically
diverse heart failure
patients with systolic
dysfunction in ambula-
tory care practices.
The intervention group
had signifi cantly fewer
hospitalizations than the
usual care group over
the 12-month period of
the nurse-facilitated,
self-management pro-
gram. Furthermore, at
the 18-month follow-up,
intervention patients had
55 fewer cumulative hos-
pitalizations than their
usual care counterparts.
The intervention group
also rated their overall
daily functioning sig-
nifi cantly higher than the
control group.
Table 7.2
2
2
4
Southard
et al.
(2003)
Two-group randomized con-
trolled trial. CVD patients
were randomized to the
Web-based intervention
(n = 53); and usual care
(n = 51) for 6 months.
Cardiovascular
disease
Web site,
e-mail,
discus-
sion group,
online sup-
port group,
online risk
assessment
tool, medi-
ated contact
with expert,
snail mail,
telephone
Evaluate effi cacy of
an Internet-based 24-
week clinical trial that
provided risk-factor
management training,
risk-factor education,
and monitoring to CVD
patients as compared
to usual care.
Fewer cardiovascular
events occurred in in-
tervention group p =
0.053 as compared to
usual care. Cost $453
per patient with return on
investment estimated at
213%. Weight loss was
statistically signifi cant in
intervention group. No
statistically signifi cant
differences between
intervention and control
groups were found for
depression scores, blood
pressure, and dietary
habits.
(continued )
2
2
5
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Stuifber-
gen et al.
(2003)
142 women with multiple
sclerosis (MS) were ran-
domly assigned to either a
combined face-to-face and
telephone-based cognitive-
behavioral (CB) intervention
(n = 76) or to waiting-list
control group (n = 66).
The two-phase intervention
included face-to-face CB
classes for 8 weeks, then
3 months of telephone fol-
low-up reinforcing patient
self-effi cacy and goal attain-
ment. Participants were fol-
lowed over an 8-month
Other chronic con-
ditions (multiple
sclerosis)
Telephone To compare the effects
of a wellness interven-
tion program versus
a waiting list control
condition for women
with MS on self-
effi cacy, use of health-
promoting behaviors,
and QOL.
A statistically signifi cant
group by time effect for
self-effi cacy for health be-
haviors, health-promoting
behaviors, and the mental
health and pain scales
of the SF-36. Telephone-
based CB intervention led
to signifi cant increases
in self-effi cacy, use of
health-promoting behav-
iors, and perceptions of
mental health and pain
from baseline to the
8-month follow-up,
whereas little or no
change was found for the
waiting-list control group.
Table 7.2
2
2
6
Tatti &
Lehmann
(2003)
period. Control group par-
ticipants had contact only
with the project manager
during the 8-month dura-
tion of the study. Principal
outcomes measures were
health-promoting behaviors
and quality of life (QOL).
Two-group randomized
study involving Type 1 dia-
betes patients. Treatment
group was exposed to the
online interactive diabetes
simulator (AIDA) (n = 12),
while the control group (n =
12) received conventional
lessons with slides and
transparencies for a total of
six lessons over a 6-week
period.
Diabetes Web site,
face-to-face
contact with
expert
Investigate effects of
a 6-week educational
intervention with or
without supplemental
use of AIDA. AIDA
is a free Web-based
program that provides
interactive simulation
of plasma insulin and
blood glucose profi les
for demonstration,
teaching, and self-
learning purposes.
HbA1c and number of
symptomatic hypoglyce-
mic episodes dropped
signifi cantly in the treat-
ment group exposed to
the Web-based diabetes
simulator compared to the
control. Treatment was a
success on all or on most
major points.
(continued )
2
2
7
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Tranmer
& Parry
(2004)
Cardiac surgery patients
(N = 200) were randomly
allocated to two groups:
(a) an intervention group
(n = 102) who received
telephone calls from an ad-
vanced practice nurse (APN)
twice during the fi rst week
following discharge then
weekly thereafter for
4 weeks, and (b) a usual
care group (n = 98). The in-
tervention approach included
ongoing information and
assessment, self-manage-
ment of common symptoms,
and referrals to appropriate
health care resources. The
usual care group received
standard outpatient prepara-
tion, an education booklet,
and home care follow-up,
as necessary. Measures of
health-related quality of life
(HRQL), symptom distress,
and unexpected health care
contacts were obtained at
5 weeks following discharge.
Cardiovascular
disease
Telephone To compare the effects
of APN telephone-
delivered support
and self-management
training versus usual
care on HRQL, symp-
tom distress, and un-
planned contacts with
the hospital following
discharge from cardiac
surgery.
There were no signifi –
cant group differences
in HRQL, unexpected
contacts with the health
care system, or symptom
distress.
Table 7.22
2
8
van den
Berg et al.
(2006)
Physically inactive patients
with rheumatoid arthritis
were randomly assigned to
an Internet-based physical
activity program with indi-
vidual guidance, a bicycle
ergometer, and group con-
tacts (individualized training
[IT] group; n = 82) or to
an Internet-based program
providing only general infor-
mation on exercises (general
training [GT] group; n = 78).
Chronic pain (rheu-
matoid arthritis)
Web site,
e-mail,
face-to-face
contact with
expert
Compare effectiveness
of a general Internet-
based physical activ-
ity intervention and a
Web-based interven-
tion with tailored su-
pervision and training
for patients with rheu-
matoid arthritis (RA).
The study found a greater
proportion of patients
in the IT group reported
meeting physical activity
recommendations than
the general group. No
differences were found
with respect to the total
amount of physical activ-
ity as measured with an
activity monitor. There
were also no sustained
differences between the
two programs regarding
functional ability and
quality of life.
Verheijden
et al.
(2004)
Randomized controlled
trial comparing usual care
(n = 73) to usual care plus
Web-based nutrition coun-
selling and social support
(n = 73). Both groups had
access to usual care for
8 months after which the
treatment group had access
to a nutrition counselling
and social support Web site
(Heartweb).
Diabetes Web site,
online discus-
sion forum,
face-to-face
contact with
expert
Evaluate impact of
Web-based nutrition
counseling and social
support on social
support measures,
anthropometry, blood
pressure, and serum
cholesterol in patients
at increased cardiovas-
cular risk.
No statistically signifi cant
differences were found
between intervention and
control groups in terms
of social support, anthro-
pometry, blood pressure,
and serum cholesterol lev-
els. Use of the Web site
was very low.
(continued )
2
2
9
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Vidrine
et al.
(2006)
Current smokers from a
large, inner-city HIV/AIDS
care center were randomly
assigned to either a cellular
telephone smoking-cessa-
tion intervention (n = 48)
or usual care (n = 47). The
intervention group received
eight counseling sessions
delivered via cellular tele-
phone in addition to the
usual care components. The
usual care group received
brief physician advice to
quit smoking, targeted
self-help written materials,
and nicotine replacement
therapy. Smoking-related
outcomes were assessed at
a 3-month follow-up.
Other chronic condi-
tions (HIV)
Cellular
telephone
To compare the ef-
fi cacy of a telephone-
based, smoking-ces-
sation intervention
versus usual care on
quit rates in a multi-
ethnic, economically
disadvantaged HIV-
positive population.
Biochemically verifi ed
point prevalence smok-
ing abstinence rates were
10.3% for the usual care
group and 36.8% for the
cellular telephone group;
participants who received
the cellular-telephone
intervention were 3.6
times more likely to quit
smoking compared with
participants who received
usual care.
Table 7.2
2
3
0
Wagner
et al.
(2006)
Two-arm randomized con-
trolled trial. Individuals
suffering complicated grief
were randomized to a wait-
list control group (n = 29)
and e-mail–based cognitive-
behavioral therapy group.
Mental health E-mail Investigate effi cacy
of an Internet-based
cognitive-behavioral
therapy program for
bereaved people suf-
fering complicated
grief.
Compared to the wait-list
control group, patients in
the Web-based cognitive-
behavior therapy group
improved signifi cantly on
symptoms of intrusion,
avoidance, maladaptive
behavior, and general psy-
chopathology with results
maintained at 3-month
follow-up. Study also and
showed a large treatment
effect.
Winzelberg
et al.
(2003)
Two-group randomized con-
trol trial with breast cancer
survivors randomized to an
Internet-based coping skills
training group (n = 36) ver-
sus a wait-listed control
(n = 36). The group was
semistructured, moderated
by a health care professional,
and delivered in an asyn-
chronous newsgroup format.
Cancer Web site,
discussion
group, on-
line support
group, e-mail
Examine effects of a
12-week Web-based
coping skills train-
ing program, Bosom
Buddies, on reducing
breast cancer survi-
vors’ scores on depres-
sion, perceived stress,
and cancer-related
trauma measures.
Depression, perceived
stress, and cancer-related
trauma scores improved
in intervention group.
Measures of anxiety and
specifi c ways of respond-
ing to cancer did not
improve. The results
were independent of the
amount of time spent
online.
(continued )
2
3
1
2
3
2
H
e
a
lth
C
o
m
m
u
n
ic
a
tio
n
in
th
e
N
e
w
M
e
d
ia
L
a
n
d
sc
a
p
e
SUMMARY OF E-HEALTH INTERVENTIONS FOR SELF-MANAGEMENT OF CHRONIC DISEASES (continued )
AUTHORS DESIGN MEDICAL CONDITION MODALITIES RESEARCH OBJECTIVES RESULTS
Woollard
et al.
(2003)
212 patients at cardio-
vascular (CV) risk were
randomized to either: (1)
“Low” intervention (n = 69),
monthly 10–15 minute tele-
phone contacts for 1 year
followed one face-to-face
individual counseling ses-
sion; (2) “High” intervention
(n = 74) individual face-to-
face counseling continued
over 1 year, taking place
monthly for up to 1 hour, or
(3) Controls (n = 69), usual
care only. Both intervention
groups received cognitive-
behavioral intervention to
control weight, increase
physical activity, reduce fat
and sodium intake, moder-
ate alcohol intake, and en-
courage smoking cessation.
Participants were assessed
at baseline with follow-up
12 and 18 months later.
Cardiovascular
disease
Telephone To compare the ef-
fects among individual
face-to-face counsel-
ing, telephone-based
counseling, and usual
care on dietary intake,
body mass index and
blood lipids in patients
at CV risk.
Signifi cant improvements
in diet and lipid profi les
were found across all con-
ditions from baseline to
the 18-month follow-up.
Total serum cholesterol
fell by 3%, 3%, and 2%
in the High, Low, and
Control groups, respec-
tively, at 12 months and
by 7%, 5%, and 8% at
18 months. Contrary to
expectation, no group x
time interactions were
found for the primary
outcomes. Fat intake and
serum cholesterol did not
differ signifi cantly among
the groups for either the
12- or 18-month assess-
ment phases. Body mass
index also increased in all
groups with no signifi cant
changes among the three
groups.
Table 7.2
2
3
2
C
h
a
p
te
r 7
E
-H
e
a
lth
S
e
lf-C
a
re
In
te
rve
n
tio
n
s
2
3
3
Yates et al.
(2005)
A repeated measures ex-
perimental design was
used to examine outcomes
at baseline (completion of
cardiac rehabilitation [CR])
and at 3 and 6 months.
During booster sessions,
the subject’s individualized
goals, negotiated in CR,
were used as a basis for
intervening. Subjects who
reported progress toward
goal achievement were
encouraged to attribute ac-
complishments to their own
abilities. Factors inhibiting
achievement of target goals
were also discussed to deal
with areas of relapse. Usual
care for people completing
the CR program consisted
of one telephone call at 4–6
weeks to assess program
satisfaction and current
cardiovascular risk reduction
behaviors.
Cardiovascular
disease
Telephone To examine the ef-
fects of a booster
intervention on health,
behavioral, and clinical
physical status out-
comes among CR
graduates randomly as-
signed to one of three
groups: structured
educational/counseling
sessions by telephone
(n = 24), clinic
(n = 20), or usual care
(n = 20).
For subjects who had
low physical functioning
scores at baseline, the
clinic intervention was
more effective than either
phone or usual care in
increasing their physical
functioning at 3 months.
By 6 months, the differ-
ential effect of treatment
was no longer evident.
No effects of the booster
sessions were found for
behavioral outcomes,
including adherence to
the exercise program, fre-
quency of exercise, heart
rate, and blood pressure.
2
3
3
234 Health Communication in the New Media Landscape
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243
8
Increasing Computer-Mediated
Social Support
KEVIN B . WRIGHT
The rapid adoption of the Internet by many segments of society over
the past 15 years has spurred the growth of various Web sites and on-
line communities for people seeking social support for health concerns
(Wright, 2000; Wright & Bell, 2003). The Internet provides many op-
tions for individuals with health concerns who seek to supplement or
replace traditional (face-to-face) sources of social support. The Internet
appears to facilitate the maintenance of supportive relationships among
people who know one another from face-to-face contexts (such as family
members and friends) as well as the development of new relationships
online (e.g., individuals who “meet” in computer-mediated contexts,
such as online support communities).
This phenomenon has attracted the attention of social scientists and
medical researchers who are interested in the benefits of computer-
mediated social support for people with health concerns, including
important outcomes such as reduced stress and increased coping skills
(King & Moreggi, 1998; Preece & Ghozati, 2001; Wright, 2000). With
annual health care costs in the United States soaring above $1 trillion
a year (U.S. Census Bureau, 2001), researchers have become increas-
ingly interested in ways that computer-mediated social support can be
used by patients as a low-cost means of maintaining health and coping
with illness as well as for prevention of disease. Despite over a decade of
244 Health Communication in the New Media Landscape
research in the area of computer-mediated social support, it remains a
fertile context for researchers interested in the impact of new technolo-
gies for health care.
This chapter explores the various ways in which the Internet and
related new technologies may increase social support for people coping
with a variety of health concerns. Toward that end, the chapter explores
the various types of social support available online, the link between
social support and health outcomes, relational dilemmas surrounding
the provision of social support, and advantages and disadvantages of
online support groups/communities. In addition, it focuses on several
theoretical frameworks that have been useful in past research in terms
of understanding the nature of computer-mediated social support and
provides suggestions for future researchers and practitioners who are
interested in understanding computer-mediated social support and how
this knowledge can be applied to potentially improve the lives of indi-
viduals dealing with health concerns.
SOURCES OF SOCIAL SUPPORT ON THE INTERNET
The Internet provides a surprisingly vast array of potential sources of
social support for people seeking informational, emotional, and even
tangible support online. However, the majority of studies have focused
on support within online support groups and communities, largely ignor-
ing the use of Internet as a means of facilitating traditional supportive
relationships, such as those with family members and friends. This sec-
tion will briefly explore potential sources of computer-mediated social
support.
As stated above, most researchers have explored online support
groups and communities as sources of online support. This is not surpris-
ing, given the rapid growth of these groups in recent years. For exam-
ple, a brief search of support groups and communities on Yahoo yields
thousands of health-related groups dealing with almost every possible
physical and mental health issue. Early research dealing with support
provision within these groups tended to understand the various types of
support that are provided within these groups/communities (Alexander,
Peterson, & Hollingshead, 2003; Braithwaite, Waldron, & Finn, 1999;
Weinberg, Schmale, Uken, & Wessel, 1995), and several researchers
were concerned with whether more complex types of support, such as
emotional support, could be adequately provided by group/community
Chapter 8 Increasing Computer-Mediated Social Support 245
members (Campbell & Wright, 2002; Galinski, Schopler, & Abell, 1997;
Preece & Ghozati, 2001). This research found that many types of social
support are provided within these groups/communities, including infor-
mational support, emotional support, and validation, and they some-
times helped to facilitate tangible support (when participants later met
face-to-face). In addition, findings from several of these studies suggest
that the constraints of the medium do not appear to inhibit the provision
of emotional support.
Few studies have examined the use of health-related Web sites as a
source of informational support, despite the fact that several studies
have found that health information is one of the most popular topics that
individuals research on the Internet (Fox & Ranie, 2000; Harris Interac-
tive, 2001). Among communication researchers, the lack of research
interest in these Web sites as sources of social support is most likely due
to their largely non-interactive nature. However, while Web sites such as
those sponsored by the Centers for Disease Control and Prevention, the
National Institutes of Health, the National Cancer Institute, and WebMD
certainly provide links to support groups/communities and Web chats,
their main purpose is to provide individuals with information about a
wide variety of health concerns, including cancer, HIV, hypertension,
pregnancy, allergies, diet and exercise, and mental health issues. More-
over, these Web sites appear to be important sources of informational
support (Bass, 2003; Eng, 2001; Wright, 2007). In addition, information
from these online sources appears to spur increased interaction between
patients and providers within health care settings (Aspden & Katz, 2001;
Bass, 2003; Napoli, 2001).
Much less is known about family members and friends as sources
of online social support. However, in our increasingly mobile society,
the Internet appears to be an important resource for maintaining rela-
tionships among family members and friends, especially in cases where
people are geographically separated from these traditional sources
of social support. Yet the Internet may facilitate supportive interac-
tions among family members and friends who are part of a person’s
daily face-to-face support network. For example, many people use the
Internet (through e-mail and chat applications) and cell phone text-
ing to conveniently send and receive messages from members of their
face-to-face support network while they are engaged in other activi-
ties (e.g., work and school). Social network sites such as MySpace and
Facebook appear to help people maintain supportive relationships
with family members and friends even though they often overlap with
246 Health Communication in the New Media Landscape
traditional face-to-face support networks (Dwyer, 2007; Ellison, Stein-
field, & Lampe, 2007; Snyder, Carpenter, & Slauson, 2006). Future
research in computer-mediated social support would benefit by exam-
ining the use of e-mail, chat applications, and social network sites as
potential resources for obtaining health-related social support from
family members and friends.
SOCIAL SUPPORT AND HEALTH OUTCOMES
Social support researchers have devoted a great deal of attention to the
link between adequate social support provision to important physical
and psychological health outcomes. Studies from a variety of disciplines
have consistently linked traditional sources of social support to morbid-
ity and mortality rates (Berkman & Symes, 1979; Bruunk, 1990; Cohen,
1988; House, Landis, & Umberson, 1988; Uchino, Cacioppo, & Kiecolt-
Glaser, 1996). Prolonged exposure to stress has been found to impair
immune system response; increase risk for hypertension, heart disease,
and stroke; and lead to increases in depression, tension, and nervousness
(Ballieux & Heijen, 1989; Clow, 2001; Kohn, 1996).
Researchers have identified two distinct ways in which social sup-
port appears to influence health outcomes. The buffering model of social
support (Cohen & Wills, 1985; Dean & Lin, 1977) posits that an individ-
ual’s social network helps to shield him or her from stress or reduce the
amount of stress he or she may experience when he or she encounters
both major crises and everyday sources of stress. The social capital and
other resources associated with one’s support network can help buffer
or offset stressors, including those related to health concerns. The main
effects model of social support asserts that there is a direct relation-
ship between social support and health outcomes (Aneshensel & Stone,
1982). Positive interactions with one’s support network in everyday rela-
tionships appear to elevate mood, reduce stress, and make people more
resilient to stressful situations (Berkman & Syme, 1979; Cohen, 1988).
Of course, there are many mediating variables that influence the
relationship between social support and health outcomes, including an
individual’s coping abilities (Edwards & Trimble, 1992; Kohn, 1996)
and perceptions of the support provider and type of support offered (Al-
brecht & Goldsmith, 2003; Burleson, 1994). For example, informational
support is sometimes perceived as unwanted advice, individuals can dis-
miss certain problems when offering support, the timing of support may
Chapter 8 Increasing Computer-Mediated Social Support 247
be inappropriate, and there are a number of other relational concerns
that can undermine the potential benefits of social support. This follow-
ing section discusses some of these relational concerns in greater detail.
RELATIONAL CONCERNS WHEN PEOPLE
SEEK/PROVIDE SUPPORT
The process of seeking support within relationships can be a difficult
process for many individuals facing illness, who must coordinate meeting
their needs with attempting to manage relational concerns (Albrecht &
Goldsmith, 2003). According to these Albrecht and Goldsmith, partners
must cope not only with a stressor but also with the relational strains cre-
ated by the stressor and the difficulties inherent in coordinating their in-
dividual coping attempts. The practice of seeking support can involve a
complicated process of managing difficult individual coping needs while
simultaneously attempting to manage delicate relational concerns. Find-
ings from a variety of research programs suggest that many individuals
find it difficult to obtain appropriate support from friends and family
since they may feel their closer ties lack experience or have limited infor-
mation about certain problems (see Albrecht, Burleson, & Goldsmith,
1994; Barbee, Derlega, Sherburne, & Grimshaw, 1998; Brashers, Neidig,
& Goldsmith, 2004; Pakenham, 1998). Furthermore, many people may
feel uncomfortable discussing their problems with their strong ties for a
variety of other reasons, such as a desire to avoid feeling stigmatized or
patronized or being judged when discussing sensitive topics.
Other complicating relational concerns in social support situations
may include reluctance to receive inappropriate support, or not wanting
to appear vulnerable or incapable of handling one’s own problems. In
addition there are complications associated with role obligations and
reciprocity issues in many relationships (Albrecht & Goldsmith, 2003;
Chesler & Barbarin, 1984; Cline, 1999; LaGaipa, 1990). Role obligations
refer to the idea that we sometimes feel obligated to support our loved
ones even during times when we may not necessarily want to help them
due to our own concerns. Role obligations in supportive encounters have
been found to lead to resentment in some cases (Rook, 1995). Reciproc-
ity issues in supportive encounters include problems that occur when
one relational partner is under-benefited (i.e., gives more support than
he or she receives), and when a partner is over-benefited (i.e., receives
more support than he or she can give in return). People with health
248 Health Communication in the New Media Landscape
problems often find themselves in a position where they are over-
benefited as people in their social network attempt to support them dur-
ing their time of need. However, the inability to help others in such
situations has been found to lead to feelings of inadequacy, helplessness,
and demoralization in some cases (Bakas, Lewis, & Parson, 2001).
RESEARCH ON COMPUTER-MEDIATED SUPPORT GROUPS
Nearly 25 million Americans are estimated to be members of some type
of health-related support group (Kessler, Mickelson, & Zhao, 1997), and
they are the most common way that individuals in this country attempt
to change health behaviors (Davison, Pennebaker, & Dickerson, 2000).
Support groups have a long history in the United States, arising from a
variety of grassroots efforts in which people bypass professional health
care institutions and structures to form communities based on their
collective experience of facing similar illnesses and medical conditions
(Katz, 1993; Katz & Bender, 1976; Yalom, 1995). In recent years, there
has been a substantial increase in the number of computer-mediated
social support groups and communities (Walther & Boyd, 2002; Wright
& Bell, 2003). Several researchers have identified a number of advan-
tages associated with computer-mediated support groups/communities
for participants as well as many disadvantages. The following sections
will discuss these.
Advantages of Computer-Mediated Support
Groups/Communities
While relatively few studies have examined computer-mediated sup-
port groups/communities, researchers in the last decade have identi-
fied a number of advantages for those who use them (Braithwaite et al.,
1999; Galinski et al., 1997; Query & Wright, 2003; Wright, 2000, 2002).
One primary advantage is convenient access to the group/community
24 hours a day from different locations. Many online support groups/
communities feature both asynchronous communication (e.g., bulle-
tin boards, e-mail) and synchronous communication (e.g., chat rooms
or chat applications) capabilities so that participants can obtain support
from others in real time or post messages to the group. This provides
people with access to support when they are facing immediate concerns
(although the number of people using synchronous applications tends
Chapter 8 Increasing Computer-Mediated Social Support 249
to be relatively small) and allows them to make comments or pose ques-
tions to the larger group/community by posting comments via bulletin
board or mass e-mail.
These online groups/communities also offer individuals increased
anonymity compared to traditional face-to-face sources of social support
(including support groups). This can lead users to feel less stigmatized
about visible health conditions (as well as conditions that are not readily
apparent), reduce communication apprehension in terms of initiating
communication with others, and enable users to self-disclose sensitive
information in a less risky environment.
Computer-mediated support groups/communities offer participants
access to an extended support network capable of providing informa-
tional, emotional, and (in some cases) instrumental support. The medium
facilitates communication among a concentrated number of individuals
sharing similar health concerns. By comparison, suppose a person who
has recently been diagnosed with pancreatic cancer decides to seek sup-
port within his or her face-to-face community. Even with great effort, it
is unlikely that he or she would be able to find a large network of indi-
viduals living with pancreatic cancer who would be willing to provide
support. However, on the Internet, the ability of the medium to bring
together people who are geographically dispersed (yet share common
interests) can lead to a substantially larger network of potential support
providers than would be possible face-to-face. This also allows for a
larger number of perspectives about the health issue around which the
group/community is centered.
In addition to the sheer number of people to whom Internet sup-
port groups/communities can provide, these groups/communities also
introduce individuals to a more diverse social network than they are typi-
cally able to access face-to-face. In most face-to-face networks, indivi d-
uals tend to seek support from family members and close friends. These
individuals tend to be somewhat homogenous in terms of demographics,
attitudes, and backgrounds. By contrast, online support groups/com-
munities tend to help people transcend these similarities and introduce
them to a more heterogeneous network of individuals (despite the fact
that they share a common health concern). Many potential supportive
relationships in the face-to-face world are thwarted due to perceptions
that others are dissimilar.
For example, in the face-to-face world, individuals tend to rely heav-
ily on in-group/out-group differences (Giles, Mulac, Bradac, & Johnson,
1987) when comparing themselves to people who appear to be members
250 Health Communication in the New Media Landscape
of a different social group (e.g., based on sex, race, age, background).
In the computer-mediated environment, many of these social cues are
unavailable due to the reduced nonverbal information available in most
contexts. People may be more likely to judge individuals on the quality
of their verbal messages (i.e., postings) than to make snap judgments
based on visible social cues. As a result, participants can often receive
more unique and novel viewpoints about the health issue they are fac-
ing than what they are able to obtain in traditional face-to-face support
networks. This provides individuals with more opportunities for social
comparisons with other individuals facing similar health concerns. This
may help shatter perceptions of uniqueness when it comes to coping
with health issues (e.g., feelings of “Why me?”) and allow individuals to
examine their own health problems vis-à-vis the issues other group/com-
munity members are facing.
Other advantages that these groups/communities offer include the
ability for people to both receive and provide social support to others in
a convenient way. This phenomenon has been labeled the “helper prin-
ciple,” and it is a common feature in both face-to-face and online sup-
port groups (Cline, 1999; Yalom, 1995). Essentially, the ability to help
others may circumvent some of the reciprocity issues discussed earlier
in this chapter. In other words, the ability to help others by providing
informational and emotional support online in addition to receiving sup-
port may offset feelings of inadequacy and helplessness.
Moreover, researchers have also found that the act of expressing
one’s thoughts in written form (which is typically the means by which
people communicate in online support groups/communities as they post
messages, chat, or send e-mails to each other) has therapeutic value (Dia-
mond, 2000; Weinberg et al., 1995). Expressing thoughts in e-mails, on
bulletin boards, and in chat applications appears to allow psychological
distance between a person and his or her thoughts. This provides oppor-
tunities for individuals to reflect on their thoughts, reexamine them, and
rearticulate them prior to sending messages to the group. Moreover,
recent research suggests that the act of sending affectionate messages
in supportive exchanges (both in face-to-face and computer-mediated
contexts) is related to reduced total cholesterol levels and cortisol levels
(Floyd, Mikkelson, Hesse, & Pauley, 2007). Both cholesterol and cortisol
are physiological products of stress, and both have been linked to heart
disease and stroke among individuals facing long-term stressful situa-
tions. This research provides an important empirical link between sup-
portive communication and physical health outcomes. However, future
Chapter 8 Increasing Computer-Mediated Social Support 251
research would benefit from examining the relationship between sup-
portive writing and cholesterol/cortisol levels among individuals who use
computer-mediated support groups.
Disadvantages of Computer-Mediated Support
Groups/Communities
Computer-mediated support groups/communities may also have a
number of disadvantages. Wright (2000, 2002), in a survey of many
types of health-related online support groups, identified several. One
problem is the relatively short period of membership that is seen in
health-related groups. Participants often join online groups/communi-
ties when they are initially worried about a health problem or when
then they have been recently diagnosed with an illness. However, mem-
bers appear to stop using these groups/communities after a few weeks.
It seems that once some people feel that their initial concerns about
a health issue have been addressed by the group, they decide to stop
affiliating with the group and (presumably) seek support elsewhere.
Such short-term membership may lead to several problems, including
difficulty locating specific members and fewer old-timers, or individ-
uals who have been using the group/community to deal with an illness/
health concern for a long period of time. Such individuals often have a
unique perspective in terms of how to cope with the health issue. For
example, in Alcoholics Anonymous, long-term members play a crucial
role in terms of mentoring newly recovering alcoholics. Researchers
have found that long-term members play similar roles in other types
of health-related support groups (Rosenberg, 1984; Spiegel, Bloom, &
Yalom, 1981).
In addition, despite greater access to individuals who share simi-
lar health concerns in online support groups/communities, participants
often find the lack of immediacy (associated with reduced social pres-
ence) in communicating with others frustrating. Wright (2002) also
found that online support group members missed the ability to engage
in haptic communication (i.e. hugs and other expressions of supportive
touch) with fellow participants.
Other disadvantages of computer-mediated support groups include
off-topic remarks from participants, spam, privateers (people who try to
use the group/community for their own selfish purposes), and flaming
(i.e., antisocial behavior). These behaviors tend to increase negative per-
ceptions of the group/community, and they may curtail membership if
252 Health Communication in the New Media Landscape
they occur frequently. For example, the author of this chapter witnessed
mass postings of Jenny Craig diet products while he was studying online
support groups for women with anorexia and bulimia. In other words,
these privateers found the eating disorder support groups a convenient
place to pitch diet products to women who were concerned about their
weight. Early computer-mediated communication researchers posited
that the reduced social cues associated with the medium may encour-
age antisocial behaviors due to the lack of physical presence of other
participants (Walther, 1996; Walther & Burgoon, 1992). In other words,
it is much easier to be disruptive online since a person is in little danger
of physical retaliation from other members.
Moreover, the medium may facilitate deceptive practices. The ano-
nymity associated with online support groups/communities makes it
difficult to assess with whom one is really communicating. In some
cases, individuals may misrepresent themselves or pretend to have an
illness in order to receive attention from others, or they may be using the
group/community for a variety of other reasons unrelated to the purpose
of the group/community.
Finally, some members of society may have difficulty accessing or
using these groups due to financial and educational issues. For example,
while the cost of computers and Internet access has dropped consider-
ably in the past decade, some social groups (i.e., older individuals and
people living below the poverty level) may not have the means to access
computer-mediated support resources. Literacy issues may also make
it difficult for many people to participate given the necessity to possess
reading, writing, and computer skills in order to use these groups.
THEORETICAL APPROACHES TO THE STUDY
OF COMPUTER-MEDIATED SUPPORT
GROUPS/COMMUNITIES
This section presents several theoretical frameworks that have been
used to understand computer-mediated support groups/communi-
ties in prior research. These perspectives provide important insight
into the processes associated with computer-mediated social support.
Specifically, these theories help provide explanations as to why several
features of computer-mediated support groups/communities appeal to
participants.
Chapter 8 Increasing Computer-Mediated Social Support 253
Social Information Processing Theory
Social information processing theory argues that in computer-mediated
communication, message senders portray themselves in a socially fav-
orable manner to draw the attention of message receivers and foster
anticipation of future interactions (Fulk, Steinfield, Schmitz, & Power,
1987; Walther, 1992). Message receivers, in turn, tend to develop an
idealized image of the sender by placing too much value on minimal
text-based cues. In addition, the asynchronous format of most computer-
mediated interactions (and to some extent in synchronous formats,
such as chat rooms) gives the sender and the receiver more time to edit
their communication, making computer-mediated interactions more
controllable and less stressful than the immediate feedback loop inher-
ent in face-to-face interactions. Idealized perceptions and optimal self-
presentation in the computer-mediated communication process tend to
intensify in the feedback loop, and this can lead to what Walther (1996)
labeled “hyperpersonal interaction,” or a more intimate and socially
desirable exchange than face-to-face interactions.
Hyperpersonal interaction is enhanced when no face-to-face rela-
tionship exists, so that users construct impressions and present themselves
“without the interference of environmental reality” (Walther, 1996,
p.33). Hyperpersonal interaction has been found to skew perceptions of
relational partners in positive ways, and in some cases, computer-
mediated relationships may exceed face-to-face interactions in terms of
intensity; this can occur within online support groups (King & Moreggi,
1998; Walther, 1996; Wright & Bell, 2003).
Theory of Weak Tie Social Networks
One theoretical framework that has been used to explain many ad-
vantages of face-to-face and computer-mediated support networks is
Granovetter’s (1973, 1979, 1982, 1983) theory of weak ties (Adelman
et al., 1987; Walther & Boyd, 2002; Wright & Bell, 2003). According
to Adelman and associates (1979), “weak ties” refers to a “wide range
of potential supporters who lie beyond our circle of family and friends”
(p. 136). These relationships often lack the frequency of interaction
and intimacy associated with closer ties (i.e., close friends and family
members) and may include individuals such as neighbors, clergy, retail
service providers, counselors, face-to-face support group members, and
254 Health Communication in the New Media Landscape
people who interact within Internet communities. Despite less frequent
interaction and lower levels of intimacy, weak ties can often be impor-
tant sources of social support (Adelman et al., 1987; Granovetter, 1982,
1983), especially in contexts such as the Internet (Walther & Boyd, 2002;
Wright & Bell, 2003). Researchers have found that there are advantages
and disadvantages associated with seeking support in weak tie networks,
depending upon the support needs and goals of the individual.
According to Granovetter (1983), “whether one uses weak or strong
ties for various purposes depends not only on the number of ties one has
at various levels of tie strength but also on the utility of ties of different
strengths” (p. 209). The utility of the particular social network an indi-
vidual chooses to use when disclosing problems and seeking social sup-
port is influenced by a number of factors, including the type of stressful
situation he or she is facing, the degree of stigma or potential for embar-
rassment surrounding the problem, the need for emotionally meaningful
relationships, desire for new or novel information, the perceived under-
standing and competencies of potential support providers in the net-
work, judgments about role obligations, and the perceived resources and
social capital of social network members.
One reason why individuals may opt for a weak tie over a strong tie
support network is that weak ties often provide access to diverse points
of view and information that tend not to be available within more inti-
mate relationships (Adelman et al., 1987). Typically, many individuals
form close relationships with others who are similar to them in terms
of demographics, attitudes, and backgrounds (Botwin, Buss, & Shackel-
ford, 1997; Thiessen & Gregg, 1980). This homogeneous preference can
limit the diversity of information and viewpoints obtained about topics,
including health concerns.
Access to more diverse viewpoints about health problems can pro-
vide individuals with more varied informational support about health
issues, and interacting with different types of people increases the num-
ber of social comparisons a person can make about his or her health
condition vis-à-vis others (Adelman et al., 1987). The opportunity for
more social comparisons has been found to be an integral component of
support groups (Helgeson & Gottlieb, 2000), and they often help individ-
uals manage uncertainty about their health conditions. Individuals fac-
ing difficult health concerns may often obtain more useful information
by moving beyond their traditional strong tie support network. Using a
weak tie network such as a support group whose members may also have
the disease can offer perspectives from others who are likely to share
Chapter 8 Increasing Computer-Mediated Social Support 255
similar feelings about their condition, even if they are dissimilar in terms
of demographics, attitudes, and/or background. Furthermore, interact-
ing with multiple individuals in a support group setting allows users to
make assessments about how one is coping with a problem compared to
others, further helping to reduce uncertainty and anxiety.
For a variety of reasons, strong tie support networks can be per-
ceived as inadequate or incapable of providing satisfactory support, and
a range of factors, both practical and psychological, have been shown to
influence an individual’s decision to pursue weak tie support networks
as an alternative. This appears to particularly be the case when it comes
to seeking support for health issues. Health concerns are often diffi-
cult topics for people to discuss, especially when one is communicating
with a close loved one. Researchers have found that family members
and friends often minimize the concerns of those close to them who are
seeking support related to difficult health problems. In many cases, it
is not uncommon for close ties to steer conversational topics away from
emotional talk about problems, refrain from engaging in in-depth dis-
cussion of such topics, or avoid consequent interaction altogether (Cline,
1987; Dakof & Taylor, 1990; Dunkel-Schetter & Wortman, 1982; Helge-
son, Cohen, Shultz, & Yasko, 2000).
In addition, studies have found that role obligations and related reci-
procity issues in close ties can lead to problems with the provision of
social support. Support for a loved one who is ill can lead to increased
conflict, resentment, and negative feelings for both parties involved due
to reluctance to form new complicated role obligations on one hand,
and feelings of guilt and shame stemming from the perceived inability
to reciprocate, on the other (Albrecht & Goldsmith, 2003; Chesler &
Barbarin, 1984; LaGaipa, 1990; Pitula & Daugherty, 1995). Although
a person may care deeply for those he or she is close to, he or she may
easily feel overburdened if a loved one becomes ill and needs a great
amount of support, and the stress experienced can lead to conflict. At
the same time, many individuals who receive support from family mem-
bers and friends may feel uncomfortable and reluctant to accept the sup-
port when they do not have (or perceive that they do not have) the ability
to reciprocate (Chesler & Barbarin, 1984). This discomfort is based on
a sense of inequity that may lead individuals receiving support to feel
over-benefited if they cannot help or return the favor to their friends
in a similar manner. According to LaGaipa (1990), these “social obliga-
tions may override the positive effect of companionship and social sup-
port. Such constraints may have a negative effect on a person’s mental
256 Health Communication in the New Media Landscape
well-being that may not make up for the beneficial aspects of personal
relationships” (p. 126).
In contrast, since they tend to be less emotionally attached, weak
tie network members may be more willing to talk about difficult and/
or unpleasant health concerns. Moreover, many diseases and medical
conditions have been found to carry a social stigma (Mathieson, Logan-
Smith, Phillips, MacPhee, & Attia, 1996; Sullivan & Reardon, 1985),
and this dehumanizing process can negatively affect the provision of
social support (Bloom & Spiegel, 1984). Because members of weak tie
networks do not typically share an intimate relational history, they have
been found to be less likely to judge one another and frequently encour-
age one another to share concerns and feelings about living with various
stigmatized health problems.
Because other group members may also be contending with similar
health concerns, the similarity between members in terms of health con-
cerns increases empathy and understanding of the situation and fosters
opportunities for other types of emotional support such as affirmation
and validation. In addition, because of their reduced emotional attach-
ment, weak tie network members are far more adept at providing objec-
tive, disimpassioned feedback about health problems and are generally
more willing to discuss risky topics than strong tie networks of family and
friends (Adelman et al., 1987).
Social Comparison Theory
Social comparison theory (Festinger, 1954) is another potentially use-
ful framework for understanding how perceptions of others within
computer-mediated networks may provide individuals dealing with
health-related issues with relevant information that may influence
their health decision-making processes. According to social comparison
theory, individuals make assessments about their own health and coping
mechanisms by comparing them to those of others in their social net-
works (Helgeson & Gottlieb, 2000).
Helgeson and Gottlieb (2000) argue that lateral comparisons,
comparisons to similar others, may normalize people’s experiences
and reduce uncertainty and stress among those dealing with health
concerns. Lateral comparisons appear to validate people’s experiences
(e.g., interactions with providers, fears, frustrations) and reduce their
sense of social isolation when they are coping with health concerns.
However, comparing oneself to others in these environments often
Chapter 8 Increasing Computer-Mediated Social Support 257
leads to positive or negative self-assessments. For example, if a person
with cancer feels that he or she is coping with problems less effectively
than others in the online support network, this may create upward
comparisons, which could produce feelings of frustration, or it could
serve as a source of inspiration to the person to cope more effectively
by emulating the successful behaviors of those other members. Con-
versely, downward comparisons to others in the network, such as when
an individual feels that he or she is coping better than other members,
can lead to positive self-assessments and/or to negative feelings about
others if interactions with the other members are perceived as being
unhelpful.
In terms of computer-mediated supportive environments, online
support groups, support communities, and even social network sites
(e.g., MySpace) may facilitate access to a larger network of individuals
facing similar health concerns and increase the number of social com-
parisons a person can make.
Optimal Matching Model
The optimal matching model posits that an optimal match between the
needs of support seekers and the resources/abilities of support provid-
ers is important in terms of coping with the many relational challenges
associated with communicating social support (Cutrona & Russell, 1990;
Goldsmith, 2004). For example, if an individual is seeking emotional
support and validation for an eating disorder and he or she perceives
that members of his or her support network have competently listened,
expressed empathy, and acknowledged the severity of the issue, then this
would be considered an example of an optimal match between the sup-
port seeker and support providers. Conversely, if an individual desires
emotional support, and members of his or her support network provide
unwanted advice (a negative form of informational support), then this
would be considered a bad (or less-than-optimal) match.
Goldsmith (2004) contends that optimal matches in supportive epi-
sodes may lead to more positive perceptions of relational partners and
the type of support that is being offered, and this, in turn, may ultimately
influence positive health outcomes. However, research drawing from
this perspective has also found evidence that optimal support network
patterns are dynamic and may change when an individual is coping with
a non-life-threatening illness or a life-threatening illness (Carstensen &
Fredrickson, 1998; Lockenhoff & Carstensen, 2004).
258 Health Communication in the New Media Landscape
Moreover, these network patterns may also differ depending upon
whether a person is in the early stages or the late stages of an illness. This
framework may be helpful in terms of understanding why people facing
health concerns may be drawn to computer-mediated social support,
particularly when members of their traditional support network are no
longer able to adequately meet their needs following the diagnosis of an
illness or when encountering other health problems. It may also be the
case that many of the advantages of computer-mediated support groups/
communities (described above) meet individuals’ support needs (e.g.,
the desire for anonymity, multiple perspectives, convenience), and this
influences usage patterns. While this model has been applied to a variety
of face-to-face supportive contexts (see Goldsmith, 2004), relatively few
researchers have used this framework to investigate computer-mediated
support (Turner, Grube, & Meyers, 2001; Wright & Muhtaseb, 2005).
Yet this perspective may help to provide important insights into the sup-
portive needs of individuals who seek computer-mediated support.
WAYS TO INCREASE COMPUTER-MEDIATED
SOCIAL SUPPORT
Computer-mediated social support is still a relatively new area of re-
search, and additional studies are needed to understand the strengths
and limitations of these groups in terms of their ability to offer people
facing health concerns adequate support. More research needs to as-
sess the potential long-term health benefits of these groups. Most
studies of computer-mediated support have been cross-sectional, and
longitudinal designs are needed to assess the impact of this type of
support on physical and mental health outcomes. In addition, all the
current studies reviewed in this chapter relied on either surveys or
content analyses of computer-mediated support groups/communities.
The limitations of such approaches are well known, particularly in
terms of their inability to adequately control for extraneous variables
or to build a compelling case for causal relationships among variables.
Future research would benefit from controlled randomized studies
that compare the impact of computer-mediated social support with
traditional face-to-face sources. This section briefly explores these
and other limitations of the current research in this area. In addition,
it highlights several areas of research that scholars should consider in
the future that may help increase our understanding of the nature and
Chapter 8 Increasing Computer-Mediated Social Support 259
usefulness of computer-mediated support for individuals dealing with
health concerns.
There is a strong need to raise awareness of the potential of
computer-mediated networks to increase access to traditional sources
of social support, including family members and friends. E-mail, chat
applications, and social network sites provide multiple opportunities
for individuals to engage in supportive communication with family and
friends throughout the day. These online resources may help individuals
maintain relationships with important sources of social support. Given
recent research (Floyd et al., 2007) that suggests that affectionate writ-
ing (including supportive communication) may be linked to important
physical health outcomes (such as reduced cholesterol and cortisol lev-
els), future researchers should continue to examine computer-mediated
support among traditional support network ties.
However, given the difficulties that individuals encounter with
traditional close ties, such as greater interpersonal risk in disclosing
information, homogeneity of information, and role obligations, future
researchers should continue to examine the advantages and disadvan-
tages of online support groups and support communities for people fac-
ing health concerns. While earlier research on these groups/communities
has identified a number of potential advantages for people seeking social
support (e.g., multiple perspectives, less risk, fewer role obligations, the
therapeutic value of expressing thoughts in written form), and they have
advanced theories about possible underlying processes (e.g., weak tie
network theory, social comparison theory), relatively few studies have
linked these advantages to physical health outcomes in controlled lon-
gitudinal studies (see Shaw, Hawkins, McTavish, Pingree, & Gustafson,
2006, for exceptions). These types of research efforts typically require
funding from organizations such as the National Institutes of Health and
the Centers for Disease Control and Prevention, which may explain why
so few of them have been conducted. However, such research is neces-
sary in order to assess the viability of these groups for improving the
health of participants.
Future research efforts should also consider designing interven-
tions that will help increase access to computer-mediated social support,
particularly among underserved populations (i.e., lower-socioeconomic-
status groups, minorities, and individuals with low literacy levels). Such
initiatives should focus on increasing computer access and computer
literacy training among members of these populations. One particular
underserved population is older adults, particularly female caregivers
260 Health Communication in the New Media Landscape
and older people facing health concerns (especially those individuals who
have not had opportunities to learn about the Internet and computer-
mediated communication). Given the rapid growth of this population in
recent years and the lack of opportunities many individuals in this demo-
graphic group have had to learn computer skills (e.g., many members
of the oldest cohort of older adults, such as people in their late 1980s
and 1990s, retired from the workplace before the use of computers and
the Internet became widespread), and the relatively high correlation
between aging and health problems, older adults are a challenging and
important group to target when one is designing interventions centered
around computer-mediated social support.
There is also a need to educate individuals who are facing specific
health concerns (such as various types of cancer) about the strengths
and limitations of computer-mediated support groups/communities.
Many people who currently use these groups may be unaware of the
potential health benefits associated with them or problems that can
occur. Health professionals and other researchers would benefit from
conducting studies of currently available groups and identifying groups
that may best meet the needs of patients/interested parties. At this
point in time, anyone can create an online support group/community,
and there is little data regarding the quality of these groups. An alarm-
ing statistic from one study is that between 30% and 40% of health
information regarding cancer on the Internet (including information
disseminated in online support groups/communities) was found to be
inaccurate (Bierman, Golladay, & Baker, 1999). This, of course, raises
questions about the accuracy of information surrounding other diseases
and health issues. There is a great need to assess the quality and cred-
ibility of information that individuals receive in support groups/commu-
nities. In addition, it would be helpful to identify groups/communities
that have a history of spam, privateers, conflicts, and other negative
elements that may undermine the health benefits of participating in
such groups.
Finally, potential group users should be educated about the relation-
ship between social support and health outcomes, social support pro-
cesses, and the nature of computer-mediated social support. Despite the
fact that there is over a decade of research on computer-mediated social
support, there have been few efforts to disseminate the findings to lay
populations or to increase health literacy regarding these groups. Future
interventions and research efforts should find ways to raise awareness of
the benefits and limitations of these groups (in terms of health benefits)
Chapter 8 Increasing Computer-Mediated Social Support 261
among online support group/community participants (the most impor-
tant stakeholders).
CONCLUSION
Computer-mediated social support is an important health communica-
tion area to study in the new media landscape. Most of the previous
research suggests that online support has potential health benefits for
those individuals who use computer-mediated support groups/com-
munities or who engage in other types of online support. However,
despite some of the advantages of using these resources, there are also
problems associated with them. The use of the Internet as a vehicle
for obtaining social support from traditional sources (i.e., family and
friends) remains an important area for future research. In addition,
future research should continue to focus on the relationship between
computer-mediated support and health outcomes, and researchers
should attempt to disseminate findings to potential users and health
care professionals in an effort to increase education about these sources
of social support.
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267
9
Increasingly, individuals are turning to the Internet and other digital ap-
plications to help them manage their health and health care. The digital
environment provides ready access to general health information, social
networks for sharing experiences, and, increasingly, access to health care
information that has traditionally resided only within the health records
of the health care provider or the health plan.
At the same time, the Internet is increasingly being leveraged to
expand advocacy-related efforts targeting policy makers, enabling a
wider and more diverse number of individuals to influence the public
policy process.
While there is a great deal of advocacy conducted related to health
care issues today, the number and amount of resources devoted by
patient groups to advocacy on health care–related issues is small com-
pared to efforts conducted by other stakeholders in the health care
system—including those who deliver, support, pay for, and manage
health care.
The convergence of the use of the Internet and related electronic
tools to support patients in managing their health and health care and the
use of the Internet for advocacy offer an opportunity to engage the voice
of the consumer more fully in accelerating health care policy change.
Engaging Consumers in Health
Care Advocacy Using the Internet
JANET M. MARCHIBRODA
268 Health Communication in the New Media Landscape
THE NEED FOR HEALTH CARE ADVOCACY
Rising health care costs, the rising number of uninsured, and issues re-
lated to both the quality and cost of health care are areas of great con-
cern within the U.S. health care system.
Health care spending in the United States is expected to increase
from 16% of the gross domestic product (or $2 trillion) to 20% of the
GDP (or $4 trillion) by the 2016 Centers for Medicare and Medicaid
Services (2007). U.S. health care spending is much higher than in other
industrialized countries. According to the Organisation for Economic
Co-operation and Development (OECD), health care spending per
capita in Switzerland—the next most costly OECD country—is only
68% of that in the United States. In Canada, it is only 57%, and in the
median OECD country it is less than 44% of the U.S. level (Reinhardt,
2004).
High health care costs are having an impact on out-of-pocket costs
for those who have health insurance. According to a recent survey
conducted by the Kaiser Family Foundation (2006), 21% of employ-
ers reported that it is “very likely” and 28% reported that it was “some-
what likely” that they would increase the amount that employees pay
for health insurance in the coming year. Health insurance premiums for
workers and their employees have skyrocketed by 87% since 2000, the
survey found, while workers’ earnings have risen by only 20% over the
same time period.
Quality is also an issue of concern for policy makers and health care
leaders. According to a study published in the New England Journal of
Medicine, U.S. adults receive about half of recommended health care
services (McGlynn, 2003). And poor quality translates into higher costs.
According to the Commonwealth Fund–sponsored U.S. Scorecard on
Health System Performance, the current gap between national average
rates of diabetes and blood pressure control and rates achieved by the
top 10% of health plans translates into an estimated 20,000 to 40,000 pre-
ventable deaths and $1 to $2 billion in avoidable medical costs (Common-
wealth Fund, 2006).
The number of Americans with chronic disease is also having an
impact on cost. More than 125 million Americans had at least one
chronic care condition in 2000, and this number is expected to grow to
157 million by the year 2020 (Wu, 2000). People with chronic condi-
tions absorb the majority of health care spending in the United States,
Chapter 9 Engaging Consumers in Health Care Advocacy Using the Internet 269
accounting for 78% of all health care spending in 1998 (Agency for
Healthcare Research and Quality, 1998). As baby boomers continue to
age, the number of individuals living with chronic conditions will con-
tinue to grow. While 12.7% of the population during the year 2000 was
age 65 or older, this number is expected to grow to 20% by the year
2030 (U.S. Bureau of the Census, 2000). Finally, according to the U.S.
Census Bureau, the number of uninsured Americans rose by 2.2 million
in 2006 to 47 million in 2007—the largest 1-year increase since 2002.
As a result of the recognition of these health care challenges, a num-
ber of policy makers within the federal government, in Congress, and at
the state level have introduced a wide range of policies related to financ-
ing, access, and the use of health information technology to address
these issues.
Consumers are also recognizing the challenges of the current health
care system. According to a 2006 Kaiser Family Foundation survey, over
half (54%) of American adults were dissatisfied with the quality of health
care, and almost a third (31%) were very dissatisfied. In addition, over
81% of Americans were dissatisfied with the cost of health care in the
United States, and the majority (56%) was very dissatisfied.
The Commonwealth Fund (2006) recently conducted a survey of
consumer views about key health care issues. According to that research,
38% of consumers had very serious or somewhat serious problems pay-
ing for their family’s medical bills and paying for their family’s medical
insurance. Forty-eight percent of those surveyed were somewhat wor-
ried or very worried that they would not be able to pay medical bills in
the event of a serious illness.
At the same time, 47% of consumers surveyed indicated that they
were very worried or somewhat worried that they would not get high-
quality care when they needed it (Commonwealth Fund, 2006). Twenty –
five percent of those surveyed reported that they had experienced
recommendations for unnecessary care or treatments over the past 2
years, and 17% reported having experienced over the past 2 years either
the ordering of a test that had already been done or a medical, surgical,
medication, or laboratory test error (Commonwealth Fund, 2006).
According to a Kaiser (2007) Health Tracking Poll related to the
2008 presidential election conducted in December 2007, health care
ranks second behind Iraq as the top issue that the public wanted the
presidential candidates to talk about, with 35% of respondents citing
Iraq as the top issue and 30% citing health care as the top issue.
270 Health Communication in the New Media Landscape
CONSUMER USE OF THE INTERNET TO SUPPORT
HEALTH CARE NEEDS
Increasingly, consumers are using the Internet to support them with the
management of their health and health care. Consumer interest in using
the Internet to search for health information has continued to grow,
along with interest in accessing information related to health care deliv-
ery. According to a Pew Internet & American Life research study, 79%
of Internet users (95 million American adults) have searched online for
information on at least one major health topic (Fox, 2005). According
to the survey, specific diseases and treatments continue to be the most
popular topics, but the greatest growth is in the number of people seek-
ing information about doctors and hospitals, experimental treatments,
health insurance, medicines, fitness, and nutrition (Fox, 2005).
A more recent Pew survey indicates that adults living with a dis-
ability or chronic disease are less likely than others to go online, but
once they are online, they are more likely to look for health information.
According to the survey, 51% of those living with a disability or chronic
disease go online, compared to 74% of those who report no chronic con-
ditions (Fox, 2007). The research findings further support the fact that
those with chronic conditions are more likely than other e-patients to
report that their online searches affected their treatment decisions, their
interactions with their doctors, their ability to cope with their condition,
and their dieting and fitness regimen, as noted below.
Seventy-fi ve percent of e-patients with chronic conditions said
the information they found in their last search affected a decision
about how to treat an illness or condition, compared with 55% of
e-patients who reported no disability or illness.
Sixty-nine percent of e-patients with chronic conditions said the
information led them to ask a doctor new questions or to get a
second opinion from another doctor, compared with 52% of other
e-patients.
Fifty-seven percent of e-patients with chronic conditions said the
information changed the way they cope with a chronic condition
or manage pain, compared with 36% of other e-patients.
Fifty-six percent of e-patients with chronic conditions said the
information changed the way they think about diet, exercise, or
stress management, compared with 42% of other e-patients (Fox,
2007).
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Chapter 9 Engaging Consumers in Health Care Advocacy Using the Internet 271
Research also points to consumer interest in having greater elec-
tronic access to health information. According to an October 2005
research report supported by the Markle Foundation, 60% of Americans
support the creation of a secure online “personal health record” service
that would allow consumers to:
Check and refi ll prescriptions.
Get results over the Internet.
Check for mistakes in the medical record.
Conduct secure and private e-mail communication with their doc-
tors (Fox, 2007).
The same research report cites strong evidence that Americans
would actually use an online personal health record service to:
Check for mistakes in their medical record (69%).
Check and refi ll prescriptions (68%).
Conduct secure and private e-mail communications with their
doctors (57%).
Get results over the Internet (58%).
A more recent report released by the Markle Foundation in December
2006 offered similar insights. According to the National Survey on Elec-
tronic Personal Health Records, the public feels that access to electronic
personal health records would have the following personal benefits:
Enable them to see what their doctors write down (91%).
Enable them to check for mistakes (84%).
Reduce the number of repeated tests and procedures they un-
dergo (88%).
According to research conducted by Public Opinion Strategies, and
supported by the eHealth Initiative Foundation in June 2006, 70% of
Americans in the Gulf Coast following Hurricanes Katrina and Rita favor
the creation of secure electronic health information exchange to give
both patients and clinicians access to important medical information to
support their health and health care, which “with their consent[,] . . .
would be protected and exchanged under current medical privacy and
confidentiality standard procedures” (eHealth Initiative Foundation,
2006).
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272 Health Communication in the New Media Landscape
Over the past year, there has been a considerable increase in inter-
est in “personal health records” as several health plans, employers, and
commercial vendors have announced new projects. In addition, policies
related to personal health records are also emerging, most notably from
groups such as those sponsored by the Markle Foundation (2008). A per-
sonal health record is often defined as an electronic record on a patient’s
health, which is controlled by the patient, who may take it from doctor
to doctor or have it available online in the event of an emergency (Dolan,
2007). Personal health records ordinarily enable patients to log their own
data into a system and are also designed to offer patients better access
to their own health care data from other data sources, including their
providers and health plans. Personal health records are being developed
and offered by a wide and diverse range of organizations, including start-
up companies, hospitals, and other provider organizations, clinicians,
health plans, patient communities, and even large organizations such as
Google, Microsoft, and WebMD.
Personal health records are also being developed by those who have
experienced difficulties with the current system. For example, FollowMe
was developed by a mother who was frustrated with current methods for
managing the records of her son, who was diagnosed with hydrocepha-
lus, or excess accumulation of fluid in the brain (Gearon, 2005). This
application is now being used by migrant workers in California to break
down language barriers and support continuity of care (Jackson, 2004).
In addition, the number of online or virtual communities focused on
health care is continuing to rise. Virtual communities are social networks
formed or facilitated through electronic media (Wellman, 1997). These
online communities are often called “electronic peer to peer commu-
nity networks,” where people with common interests gather “virtually”
to share experiences, ask questions, or provide emotional support and
self-help. As of January 2008, Yahoo!Groups listed more than 61,000
electronic support groups in their health and wellness section.
Examples of virtual communities include Patients Like Me and Brain-
talk Communities. Patients Like Me is an online platform for collecting and
sharing real-world patient data, currently focusing on ALS (Lou Gehrig’s
disease), multiple sclerosis, Parkinson’s disease, and HIV/AIDS. Patients
log their symptoms, treatments, and outcomes, and the site aggregates
the data to help patients with these life-changing diseases compare their
experiences with symptoms, treatments, and outcomes tracked at the
population level (PatientsLikeMe, 2008). As of January 2008, there were
at least 5,664 patients using the site. Braintalk Communities is an online
Chapter 9 Engaging Consumers in Health Care Advocacy Using the Internet 273
patient support group for neurology, which was established in 1993, with
19,518 members as of January 2008, 15,841 of whom were active (Brain-
talk Communities, 2008).
Anecdotal evidence shows that electronic peer-to-peer self-help
groups might provide beneficial interventions. Tom Ferguson (1999)
released the results of his survey of 191 respondents to an online ser-
vice for people with chronic and serious illnesses. According to the sur-
vey results, those who responded rated online support communities as
more helpful than either specialists or primary care physicians in 10 of
12 dimensions of care.
TRADITIONAL APPROACHES TO ADVOCATING
FOR POLICY
Advocacy efforts conducted by interest groups play a strong role in shap-
ing public policy in the United States. According to research, more than
$2.6 billion is now spent in the United States in support of lobbying or
advocacy activities (Center for Responsive Politics, 2007). In 1994, it was
estimated that there were as many as 25,000 recognized interest groups,
with many more small local and regional groups, both formal and infor-
mal (Rauch, 1994). An interest group is an organized body of individuals
or organizations that attempts to influence public policy (Rubin, 1997).
Interest groups are increasingly the mechanism of choice for indi-
viduals and organizations who want to make their voices heard on public
policy issues, in that they allow those who, individually, may have com-
paratively little at stake to aggregate their stakes with others, thereby
making it economically and politically feasible to attempt to influence
policy (Rubin, 1997).
The formation of groups and associations to influence public policy
through advocacy goes back to the beginning of the United States.
According to David Gergen, “the whole argument in The Federalist
Papers in favor of the Constitution, was that, inevitably, the country
would have factions—associations—and that the best way to have a safe,
sound, healthy republic with a boisterous democracy would be to give
them free voice, and they would compete against each other. Faction
would be pitted against faction. From that contest would come a better,
stronger republic (Farnham, 2005).”
Successful advocacy efforts engage in an issue early; effectively
identify and persuade their targets, which may include Congress, the
274 Health Communication in the New Media Landscape
executive branch, the state governments, and even the corporate sector;
effectively understand and influence public opinion; use information for
persuasion; engage the media; effectively build and manage coalitions;
mobilize grassroots support; and effectively persuade decision makers
(Rubin, 1997).
According to some leaders in the field and experts in the area of
advocacy, well-run advocacy efforts typically share the following attri-
butes to ensure their success:
They think creatively, differentiating the association or the issue
to ensure that messages get heard.
They leverage the organization’s assets, which may include
the knowledge and expertise of the organization’s members or
leaders.
They apply campaign strategies, which involve defi ning the issue,
developing consistent key messages, promoting local involvement,
and “winning with the facts.”
They cultivate a wide group of allies, with other organizations and
stakeholders.
They defi ne the issues by their societal benefi ts.
They treat opponents with dignity and respect (Shapiro, 2003).
In addition, successful advocacy campaigns ordinarily engage orga-
nizations that represent different interests—often through coalitions—
to carry a common message. A coalition is an “alliance, usually limited
in time and purpose, between organizations with different agendas,
working together for a common policy advocacy goal” (Rubin, 2000,
p. 132.).
HEALTH CARE ADVOCACY
Nearly every stakeholder group within health care is represented by a
wide range of associations and nonprofit organizations, including clini-
cians, community health centers, employers, health plans, hospitals and
other providers, laboratories, medical device manufacturers, pharma-
cies, pharmaceutical organizations, public health agencies, research or-
ganizations, and even patients and consumers. In fact, of all industries,
health care spends the most on lobbying activities (Center for Respon-
sive Politics, 2007).
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Chapter 9 Engaging Consumers in Health Care Advocacy Using the Internet 275
In addition, a large number of nonprofit organizations, think tanks,
and foundations have been instrumental in influencing policy change by
providing educational background and papers describing the issues.
Some consumer groups have been highly effective in driving health
care policy change. The AARP is one example. The AARP, a leading
nonprofit, nonpartisan organization with more than 39 million members
who are age 50 and over, has been very effective over the years in driving
health care policy change, including its efforts to advance a drug benefit
for seniors. Its most recent health care campaign is entitled Divided We
Fail; it is a collaborative effort involving the AARP, the Business Round-
table, the Service Employees Union, and the National Federation of
Independent Businesses, which are engaging a variety of individuals and
organizations to find bipartisan solutions to ensure affordable, quality
health care and long-term financial security for everyone (AARP, 2008).
Another group that has been effective in health care advocacy is
the National Partnership for Women and Families (2008). Their Ameri-
cans for Quality Health Care Campaign, supported by the Robert Wood
Johnson Foundation, is raising public awareness and demand for qual-
ity health care information and advocating the development and pub-
lic reporting of performance measures related to quality, safety, patient
experience, and cost, and incentives that will reward quality care.
INCREASE IN THE USE OF THE INTERNET
FOR ADVOCACY
Across the board, over the last few years, advocacy efforts have been
significantly enhanced by the use of the Internet, enabling more rapid
communication of the issues to a broader set of audiences to engage
their support, using Web sites, blogs, and e-mail alerts. In addition, the
introduction of the Internet has enabled organizations to rapidly scale
their outreach efforts to policy makers through the use of e-mail and
electronic applications that make it easier to reach out to policy mak-
ers by providing contact information, key messages, and templates for
communications.
For the first time, the Internet was a key force in politics in the
2004 presidential election. According to a study conducted by the Pew
Internet & American Life Project, 75 million Americans—or 37% of the
adult population and 61% of online Americans—used the Internet to get
political news and information, discuss candidates and debate issues in
276 Health Communication in the New Media Landscape
e-mails, or participate directly in the political process by volunteering or
giving contributions to candidates (Rainie, 2005).
According to a January 2008 Pew Research Center report, the Inter-
net was a major source for news about the 2008 presidential campaign.
The proportion of Americans who say they regularly learned about the
campaign from the Internet more than doubled since 2000—from 9%
to 24%. In addition, the Internet became a leading source of campaign
news for young people, and the role of social networking sites such as
MySpace and Facebook is a notable part of the story. Forty-two percent
of those ages 18 to 29 say they regularly learned about the campaign
from the Internet, the highest percentage for any news source (Kohut,
2008).
USING THE INTERNET FOR HEALTH CARE ADVOCACY
While many consumer groups have been effective in driving health care
policy change, we have not yet seen very many patient-focused initia-
tives or sites that focus primarily on improving health and health care for
the individual incorporate advocacy-related activities into their menu of
services.
With the increase in the use of the Internet and electronic health
information by consumers to assist in the navigation of their health and
health care, and the increase in the use of the Internet for advocacy to
enable broader reach and involvement by individuals, there is an oppor-
tunity for alignment of these areas, giving consumers and patients more
of a voice on health care policy issues. The following describes a set
of steps that can be taken to engage patients and consumers using the
Internet in advocacy activities for a particular health care policy issue.
1. Clearly define the health care policy issue and develop clear
and consistent key messages. Policy makers and the public have
multiple issues competing for their attention, and therefore a
successful advocacy campaign must carefully articulate, manage,
and communicate its key messages. Clearly defining the issue
and describing why it is important and the actions that must be
taken is critical to success.
2. Develop a clear call to action. While many health care interest
groups are well aware of and do a good job of articulating the
challenges that need to be addressed, many are not as effective
Chapter 9 Engaging Consumers in Health Care Advocacy Using the Internet 277
when it comes to communicating a clear call to action, defining
the steps they would like the members of their interest group to
take to address the challenges. Action can take a variety of forms,
including writing members of Congress or state legislators, sign-
ing a letter of support, or making a donation.
3. Identify consumer and patient groups that have an interest in
and can help advance the health care issue through advocacy.
There are thousands of consumer and patient interest groups in
the United States, which vary in focus and size, and it is difficult
to engage all these groups in an advocacy campaign. An analysis
of the different groups can be performed to identify those whose
interests are most aligned with the health care policy issue and
assess which of those have the operational capabilities and re-
sources to take on the actions required for the advocacy effort.
4. Translate the health care policy issue into messages that resonate
with patients and consumers. Consumers and patients are con-
cerned about health care, yet they are not always active in the
health care policy debate. This is likely related to the general
lack of public involvement in policy, lack of awareness of the is-
sues, and skepticism about how their voice might have an impact.
In addition, many of the issues related to health care policy are
complex and make them difficult to understand, including the
underlying reasons for current challenges related to health care
quality, safety, costs, and access, which make it difficult for individ-
uals who do not focus on health care policy issues to understand.
Real stories of patients who have been affected by the chal-
lenges in the current health care system can be highly ef-
fective in communicating with individuals—in terms they
understand—why policy change is needed. Health care
policy issues, and the actions required, need to be trans-
lated into language that average Americans can understand.
There is a wide range of consumer and patient groups in the
United States, including those focused on particularly popula-
tions, such as the elderly (e.g., AARP or the National Council for
the Aging), those that are disease specific (e.g., American Heart
Association, the National Breast Cancer Coalition, and National
Association for the Mentally Ill), and those that focus on specific
issues (e.g., Friends for Cancer Research). Some of these orga-
nizations lack the resources and ability to take on issues that are
not within their primary area of focus, and therefore it is critical
278 Health Communication in the New Media Landscape
to translate the health care policy issue into messages that reso-
nate for the particular consumer or patient group’s interests.
5. Help to build support within consumer or patient groups by
engaging informal or formal leaders within the interest groups
as “champions.” Research indicates that members of groups—
whether formal or informal—trust their peers more than those
outside the interest group. Virtual patient networks such as Pa-
tients Like Me build their model on patients sharing information
with each other, offering a framework and an environment to
facilitate that sharing. To help build support, one should seek
out—and engage—both formal and informal leaders to carry the
importance of the message to the broader group.
6. Develop an online advocacy strategy that can easily be imple-
mented by interest groups comprised of patients and consum-
ers. The vast majority of groups representing either patients or
consumers are under-resourced and do not have the ability to
undertake the steps required for a broad advocacy campaign. On
the other hand, their strength is often in the number of volun-
teers and participants in their organization or effort. The Internet
offers not only a lower-cost alternative to traditional advocacy ef-
forts; it also enables a broader number of individuals to engage
in the advocacy process more efficiently than they are able to
in traditional advocacy efforts. The online advocacy strategy can
incorporate one or more of the following key elements:
A. Web site content that includes the following:
A description of the issue and why it is important (in
language that is understandable for interest group
members).
Key facts—credible and statistically valid facts about the
issue.
Stories—examples of real-life stories that bring life to
the issue.
A call for action—the key steps that individuals can take
to address the issue.
B. An online networking mechanism, which enables the shar-
ing of information among interest group members—this
can take the form of a blog or Listserv.
C. Online newsletters that provide updates or alerts high-
lighting the status of the issue and calls for immediate ac-
tion when necessary.
■
■
■
■
Chapter 9 Engaging Consumers in Health Care Advocacy Using the Internet 279
D. An online resource that includes lists of e-mail and phone
contact information for policy makers, as well as standard
messages and templates for communications, to assist in-
dividuals in conducting outreach to policy makers and the
other organizations they are trying to influence.
E. Mechanisms to enable individuals to donate to advocacy-
related activities for the health care policy issue.
7. Develop and implement methods to measure success. Ulti-
mately the measure of success for any advocacy campaign is
whether the goal was achieved—whether legislation was passed
to address the issue or impending legislation was stopped. Other
interim metrics could include the following:
How many groups (and individuals) were engaged in the
issue?
How many consumers or patients completed the call to
action?
How many policy makers took on the issue as a result of the
advocacy effort?
Did the amount of media coverage on the issue signifi cantly
increase?
There are some early examples of how patient-centered Web sites
have begun to use the Internet to engage patients in the public policy
process. One example is WebMD, a Web site that offers health infor-
mation and tools to consumers and patients. In January 2008, WebMD
launched Election 2008: Health Matters, an online health center offer-
ing a comparison of candidates’ platforms on many health care issues,
and providing an election message board that allowed visitors to tell
their health stories and weigh in on the candidates (WebMD, n.d.).
SUMMARY AND AREAS FOR FURTHER RESEARCH
In summary, given an increasing online society, new opportunities
emerge for significantly increasing the engagement of patients and con-
sumers in advocacy efforts on health care policy issues.
Increasingly, individuals are turning to the Internet and other elec-
tronic applications to help manage their health and health care. Over the
last few years there has been a significant increase in both consumer-
directed applications related to health care using the Internet and the
■
■
■
■
280 Health Communication in the New Media Landscape
number of online communities of patients who are sharing information
to improve their health and health care.
At the same time, and as indicated by early reviews of activities re-
lated to the 2008 presidential election, the Internet is being used more
and more to educate, inform, and engage the public’s support for policy
changes and the candidates who support them. The Internet is increas-
ingly being leveraged to expand and intensify advocacy-related efforts
targeting policy makers by enabling a wider and more diverse number of
individuals to engage in the public policy process.
Today’s health care challenges, including those related to qual-
ity, safety, efficiency, and access, and the actions that must be taken to
address these challenges, would benefit considerably from more con-
sumer engagement and activation—to help drive changes in health care
policy related to these issues.
There is a near-term opportunity to expand much-needed con-
sumer involvement in driving health care policy change that will begin
to address the challenges of the U.S. health care system by engaging
individuals who currently participate either in online health communi-
ties or in other online health offerings. Traditional advocacy strategies,
including clearly defining the issue, developing key messages, and creat-
ing a call to action, can also be applied in an online environment. Online
communities and patient and consumer interest groups that already
have an online presence are in a strong position to extend their current
activities and services by also supporting advocacy-related efforts that
leverage the Internet.
More research is needed to explore whether those individuals who
visit patient-focused Web sites or participate in online communities
primarily to inform and improve their health and health care are like-
ly to engage in advocacy activities promoted by these health-related
Web sites. More research is also needed to evaluate whether advoca-
cy strategies that use the Internet are more effective than traditional
approaches.
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283
10
Physician–patient communication is the backbone of medical care and
has been shown to influence both patient satisfaction and health out-
comes (Stewart, 1995). Research in the area began in the mid-1960s and
has gained momentum in the past decades as this interaction continues
to evolve in terms of participants, complexity, and diversity. “Clear, can-
did, accurate, culturally and linguistically competent provider–patient
communication is essential for the prevention, diagnosis, treatment, and
management of health concerns,” according to Healthy People 2010.
Indeed, one of the objectives listed in the report is to improve the dia-
logue between physicians and patients (U.S. Department of Health and
Human Services, 2000).
Communication between physician and patient involves two primary
tasks: information exchange and relationship building, also referred to,
respectively, as cure and care. Information exchange, or the cure dimen-
sion, supports the compiling of medical history, describing the problem
to reach a diagnosis, and understanding treatment (Cegala, McGee, &
McNeilis, 1996; van den Brink-Muinen, van Dulmen, Jung, & Bensing,
2007). It is influenced by the racial concordance between patient and
doctor; the physician’s use of jargon; and the patient’s age, education,
income, dialect, and attitudes toward illness (Gordon, Street, Sharf, &
Souchek, 2006; Shuy, 1993; Siminoff, Graham, & Gordon, 2006).
Improving Physician–Patient
Communication
PETYA ECKLER, GREGORY M. WORSOWICZ,
AND KATHERINE DOWNEY
284 Health Communication in the New Media Landscape
The affective side of communication, or the care dimension, relates
to physician friendliness, empathy, reassurance, and understanding of
patient expectations and concerns; patients have found this aspect quite
unsatisfactory (Myerscough & Ford, 1996; van den Brink-Muinen et al.,
2007). Relationship building correlates positively with patient satisfac-
tion and, to a lesser extent, with treatment compliance (Cegala et al.,
1996). To address these distinct and sometimes conflicting aspects of
communication, medical schools have developed programs for both
communication and interpersonal skills (Duffy, Gordon, Whelan, Cole-
Kelly, & Frankel, 2004).
Based on levels of control over the exchange, Stewart and Roter’s
(1989) theoretical model distinguishes several types of relationships.
A paternalistic relationship has high physician control and low patient
control, while a consumerist relationship has high patient and low phy-
sician control. In a mutual relationship, both parties exercise strong con-
trol. The authors state that patients may adopt a passive role by default,
unaware of alternatives or unable to negotiate a more active stance. In
particular, older, less educated patients are more likely to be in a pater-
nalistic relationship, while younger, more educated, and more skeptical
patients are more likely to exact a relationship with high patient control.
This relationship is not a constant, however, and may change depending
on the needs and circumstances of the participants, so neither model is
forever appropriate or inappropriate (Stewart & Roter, 1989).
Traditionally, communication has been discussed in terms of the
medical encounter and mainly the medical interview. The very struc-
ture of the interview, however, affects its content and consequences: it is
unlike a regular conversation because of the imbalance in participation
of the two parties. On average doctors talk for 60% of the time (range
51%–77%) and patients talk for 40% (range 23%–49%). The question-
and-answer format itself has been found to correlate negatively with
patient compliance and recall (Roter, 1989). Because patients rarely use
this format in everyday live, it makes them uneasy and unable to share
their experiences (Shuy, 1993). Information giving, on the other hand,
relates strongly to satisfaction, compliance, and recall (Roter, 1989) but
takes a very small share of the exchange. Even when physicians engage
in information giving, they can only be effective when a positive relation-
ship already exists and if they understand patients’ attitudes to the illness
(Myerscough & Ford, 1996).
While the medical interview is still considered the main commu-
nication avenue, the increasing prevalence of chronic disease and the
Chapter 10 Improving Physician–Patient Communication 285
shift from inpatient to ambulatory treatment are changing the time con-
tinuum. The exchange now starts before and continues after the actual
medical encounter. New media facilitate this pre-, during, and post-
visit continuum and present an opportunity to improve communica-
tion by offering access, convenience, and consistency. But technological
advancements also present new challenges such as the lack of standard-
ized guidelines, problems of reimbursement, and legal and ethical ques-
tions. This chapter discusses these issues and their implications for the
future of physician–patient communication.
CURRENT STATE OF PHYSICIAN–PATIENT
COMMUNICATION
After decades of scientific inquiry into physician–patient communica-
tion, findings both encourage and alarm. Communication has definitely
improved, according to Stoeckle’s (1982) historical perspective of pa-
tient load in Massachusetts General Hospital. In the 1900s to the 1920s,
30 patients were seen in 2 hours, while in the 1920s through the 1940s
the number dropped to 15. Since the 1950s, between 6 and 9 patients
have been seen in 3 hours, with an average visit time of 20 minutes.
Nationwide, the average visit time in 2004 was 18.7 minutes, accord-
ing to the National Ambulatory Medical Care Survey (Hing, Cherry, &
Woodwell, 2006), up from 16.3 minutes in 1989 (Mechanic, McAlpine,
& Rosenthal, 2001). However, some are skeptical of these data, which
are based on physician self-report, because direct observation has shown
significantly shorter visit duration (Gilchrist, Stange, Flocke, McCord, &
Bourguet, 2004; Gottschalk & Flocke, 2005).
In addition, Stoeckle (1982) reported that the space in doctors’
offices has become smaller and more intimate, hence more inviting, and
waiting times for appointments, tests, and test results have decreased.
Studies have demonstrated high (80%–90%) patient satisfaction with
medical visit duration and other aspects of doctors’ visits except for cost
and waiting time (Gross, Zyzanski, Borawski, Cebul, & Stange, 1998;
Stoeckle, 1982). However, Sitzia and Wood (1997) noted that although
many patient satisfaction surveys report highly positive results because
of their methodological and conceptual approaches, the scientific com-
munity has accepted that “substantial dissatisfaction exists with specific
components of care, notably waiting times and communication in pri-
mary care.”
286 Health Communication in the New Media Landscape
Despite these encouraging findings, causes for concern still exist.
Myerscough and Ford (1996) noted that communication is the most
common cause for complaint from patients and an apparent weak point
among doctors. Research has shown that half of psychosocial and psy-
chiatric problems are missed during medical consultations, that physi-
cians interrupt an average of 18 seconds into patients’ descriptions of
their problems, that half of patient problems and concerns are neither
elicited by the physician nor disclosed by the patient, that patients and
physicians do not agree on the main presenting problem in half of the
visits, and that patients are dissatisfied with the information provided by
physicians (Stewart, 1995). Physicians sometimes share uninvited per-
sonal information, which distracts the patient and interrupts the flow of
the conversation (McDaniel et al., 2007). When discussing side effects
of therapeutic drugs, patients usually initiate the talk and doctors are
more likely to deny than affirm the possibility, even for patients who are
likely to develop side effects and even when the described symptoms of
possible side effects have a strong literature support to be connected to
the drug (Golomb, McGraw, Evans, & Dimsdale, 2007).
While scholars generally agree that communication needs to improve,
it is worth discussing how it can benefit patients and physicians. For
patients, better dialogue has led to higher satisfaction; lower stress, anxi-
ety, and pain; increased compliance; better understanding of treatment
risks; less frequent use of therapeutic drugs; better-controlled hemo-
globin and blood pressure; fewer emergency visits; and shorter hospi-
tal stays. For physicians, improved communication has caused higher
satisfaction and fewer medical errors and malpractice lawsuits (Bull
et al., 2002; Golomb et al., 2007; Greenfield, Kaplan, Ware, Yano, &
Frank, 1998; Shaw, Zaia, Pransky, Winters, & Patterson, 2005; Sutcliffe,
Lewton, & Rosenthal, 2004; Travaline, Ruchinskas, & D’Alonzo, 2005).
RECENT DEVELOPMENTS IN PHYSICIAN–PATIENT
COMMUNICATION
In view of the recognized importance of communication for the qual-
ity of health care, a number of recent developments have aimed at im-
proving it. These include better education and formal testing in medical
schools and residency programs; the shift of the time continuum into
pre-, during, and post-visit; the shift toward a patient-centered, consum-
erist model of communication; and the introduction of new media.
Chapter 10 Improving Physician–Patient Communication 287
In 1978 the Society of General Internal Medicine addressed the
importance of communication and started offering medical faculty an
annual course on teaching effective communication skills. Communica-
tion is now in the foreground at medical schools and residency programs
and the Accreditation Council for Graduate Medical Education and the
Liaison Committee on Medical Education have identified these skills
as core competencies. The Accreditation Council for Graduate Medical
Education expects residents to create and sustain therapeutic and ethi-
cally sound relationships with patients by using effective listening, non-
verbal, explanatory, questioning, and writing skills. Most (65%) medical
schools in 1993 had a formal curriculum in communication skills, com-
pared to 35% in 1978 (Kalet et al., 2004). The National Board of Medical
Examiners has added a communication and interpersonal skills subcom-
ponent to the U.S. Medical Licensing Examination, during which medi-
cal students are tested on their ability to ascertain patient expectations,
feelings, and concerns; determine patient support systems and impact of
illness; encourage additional questions or engage in further discussion;
and make empathetic remarks about patient concerns (Guadagnino,
2006).
The time continuum of physician–patient communication has been
changing due to the increasing prevalence of chronic disease, which
requires continuous management, and the shift from inpatient to ambu-
latory treatment. Communication now starts before the medical encoun-
ter and continues afterward, and new media facilitate this pre-, during,
and post-visit continuum. E-mail reminders for upcoming appointments
are now commonplace, as are follow-ups with lab results. Portable media
players in waiting rooms offer patients an introduction to the visit, and
mobile devices in homes monitor chronic illnesses after the encounter.
In the past 30 years, the power balance has shifted from the physi-
cian to the patient, allowing the latter more control over the agenda.
While the patient-centered, or consumerist, method is not necessarily
recent, it is discussed here because of its continued development. We
see this process in the fact that the concept of patient-centered care
still lacks an agreed-upon definition, despite its widespread use. Mead
and Bower (2000) consider the most comprehensive description, that of
Stewart and associates (1995), who identify six interrelated components
of the model: exploring both the disease and the illness experience,
understanding the whole person, finding common ground regarding
management, incorporating prevention and health promotion, enhanc-
ing the doctor-patient relationship, and being realistic about personal
288 Health Communication in the New Media Landscape
limitations and issues such as the availability of time and resources. This
definition puts a clear focus on communication and holism—exploring,
understanding, and negotiating both disease and illness are part of good
dialogue and long-term relationship building. Mead and Bower (2000)
identify five conceptual dimensions of the patient-centered approach:
the biopsychosocial perspective, patient as person, sharing power and
responsibility, therapeutic alliance, and doctor as person.
The last recent development is the introduction of new media. New
media is a broad communication concept that can refer to any of the
following:
Emerging digital technologies and platforms—video games, vir-
tual worlds, software, mobile devices (phones, wireless handheld
devices, portable media players, electronic kiosks, interactive
TV/telemedicine)
Online communication—Internet, blogs, chat rooms, wikis, e-mail,
online newsletters
Electronic and multimedia publishing—multimedia CD-ROMs
and hypertext (Hamer, 2005).
Several main characteristics differentiate new from traditional
media. First is the use of multimedia applications, in which the same
information can be conveyed through text, audio, video, graphics, and
animation. Second is interactivity: new media are active and engaging
for the user, while old media (print and broadcast) are passive. A third
unique feature is customization: information is personalized to one’s
own needs and environment. A fourth and final characteristic is the use
of hypertext: information is not presented in a linear fashion but linked
with related content through hyperlinks, which allows for richer context
(Pavlik, 2001).
NEW MEDIA AND PHYSICIAN–PATIENT COMMUNICATION
Internet use among American adults hit an all-time high in 2006, with
73% (147 million) going online, an increase of 7% (10 million) from the
previous year. Of these users, 84 million had broadband connections at
home, an increase of 25 million from 2005 (Madden, 2006). The Inter-
net’s impact on American society was also measured by how much it
improved various aspects of users’ lives. Users reported better ability to
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Chapter 10 Improving Physician–Patient Communication 289
shop, pursue hobbies and interests, and do their jobs. Twenty percent
said the Internet improved the way they got health information.
The increasing use of new media has raised people’s expectations of
health care providers. In a nationally representative survey, 57%–77%
of adults wanted at least one type of electronic communication with
their doctor, including appointment reminders, communication of test
results and consultations by e-mail, online scheduling of visits, and
home monitoring devices that transmit information to the clinic. For
62% of survey respondents, their choice of a doctor would be influ-
enced by whether he or she communicates by e-mail (Harris Interac-
tive, 2006). Other studies have confirmed this strong interest. Eighty
percent of patients at Duke Family Medicine Center were interested
in e-mail communication and 42% were willing to pay a small annual
fee for this service (Virji et al., 2006). In pediatric practices, 74%–80%
of parents wanted e-mail communication, and 65% would choose a pe-
diatrician based on that, but most (63%) were unwilling to pay extra
(Anand, Feldman, Geller, Bisbee, & Bauchner, 2005; Kleiner, Akers,
Burke, & Werner, 2002). Contrary to consumers’ strong desire for elec-
tronic communication, only 2%–4% reported availability and use of
such services, and another 3%–4% had access to the services but did
not use them (Harris Interactive, 2006). Other studies report 5%–10%
of patients e-mailing their doctors (Moyer, Stern, Dobias, Cox, & Katz,
2002; Virji et al., 2006).
Data from physicians confirm the low use of e-mail for patient com-
munication. In a survey of Florida physicians, 17% e-mailed patients
from the office but most did it rarely, and only 17% did so frequently,
accounting for just 3% of the total sample. Physician e-mail users were
younger, urban, non-Asian, practicing in family medicine or surgery,
and working in larger practices (50 or more physicians) with high-speed
Internet access (Brooks & Menachemi, 2006). A study of pediatricians
in Norfolk, Virginia, revealed 79% were reluctant to e-mail patients,
although 87% had access in the office, but many were open to having
their staff do it (Kleiner et al., 2002). Of the Florida physicians who did
not use e-mail, about half (53%) had no desire to start, and one-third
(34%) were undecided. This resistance was hardly due to unease with
the medium, because many e-mailed friends and family, colleagues, hos-
pitals, and pharmaceutical companies (Brooks & Menachemi, 2006).
290 Health Communication in the New Media Landscape
Physicians and patients who communicate by e-mail regularly
find many advantages. Patients report e-mail is convenient for setting
appointments, getting refills and referrals, and other administrative ser-
vices. E-mail users are more likely to report better communication with
the clinic, and many (85%) prefer it versus the telephone for non-urgent
messages. E-mail also provides constant availability and 73% of mes-
sages are sent outside clinic hours (Lin, Wittevrongel, Moore, Beaty, &
Ross, 2005). In another study, 58% of patient e-mails and 61% of physi-
cian e-mails were sent after hours and on weekends (Anand et al., 2005).
E-mail is also more efficient for patients, as it saves them time and extra
telephone calls or visits to the clinic (Leong, Gingrich, Lewis, Mauger, &
George, 2005; Lin et al., 2005). E-mail communication also urges more
FYI and psychosocial messages from patients, and more direct and elab-
orate advice from doctors (Lin et al., 2005).
Physicians experience benefits as well. Daily users report it to be a
time-saving alternative to phones, as it allows patients direct access and
can be maintained even when patients travel (Patt, Houston, Jenckes,
Sands, & Ford, 2003). In fact, an e-mail address can provide a more
reliable connection to some users than a home address or a telephone
number (Virji et al., 2006). Similar to patients, most physicians (60%)
see e-mail as a good way to handle administrative tasks (Moyer et al.,
2002). It also allows for gathering previsit information, such as medi-
cal history and information regarding allergies and current medications,
which saves time during the visit and facilitates follow-up when patients
ask questions or request clarification (Patt et al., 2003).
Barriers and concerns have also been identified. Moyer and associ-
ates (2002) reported that most common among patients were prefer-
ences to speak with a real person or use the telephone and fear that the
message would get lost or that the reply would take too long. Surpris-
ingly, privacy concerns were least common. Concerns were more pro-
nounced among nonusers than users. A patient survey by Katz, Moyer,
Cox, and Stern (2003) suggested a potential conflict regarding the role
of staff in e-mail exchanges. More than 75% of doctors were comfortable
with staff answering patient messages, and nearly half felt patient e-mails
should go to staff first. In contrast, only 32% of patients felt comfortable
with staff answering e-mails to their providers, and 52% felt e-mails sent
to the provider should only be read by him or her. Patient preferences
regarding e-mail communication depend on the topic. E-mail is the best
option for routine topics such as cholesterol results, normal PAP/PSA
test results, prescription renewals, sore throat, and back pain, whereas
Chapter 10 Improving Physician–Patient Communication 291
in-person communication is preferred for sensitive issues such as breast/
testicular pain, abnormal PAP/PSA test results, mental health issues, and
sexually transmitted infection test results (Katz et al., 2003).
In light of the huge discrepancy between patients’ desires to com-
municate electronically and doctors’ readiness to do so (Anand et al.,
2005; Brooks & Menachemi, 2006; Harris Interactive, 2006; Kleiner
et al., 2002; Virji et al., 2006), physicians’ concerns need to be recog-
nized. In a survey of physicians who frequently e-mail patients, most
were satisfied, but 25% said they would not recommend it to a colleague.
Their most common concerns were medico-legal issues, time demands,
some patients’ lack of access to e-mail, patient difficulty in usage, and
staff being unhappy. Most dissatisfied doctors (80%) used e-mail upon
patients’ request (Houston, Sands, Nash, & Ford, 2003). In another
survey, 44% of physicians said e-mail would add to their workload, and
half feared becoming overwhelmed. Regular e-mail users (not just with
patients) had more positive attitudes than infrequent users, suggesting
that concerns may result from inexperience with the medium (Moyer
et al., 2002).
The topic of anxiety about time or work demands is prevalent in the
literature, but no consensus exists on the actual time or effort spent on
e-mail. One study reported physicians receiving one to five messages
per day and spending 2 minutes responding to each, while in another,
physicians estimated devoting 30 minutes daily to e-mail communica-
tion (Anand et al., 2005; Houston et al., 2003). Lin and colleagues (2005)
found that e-mail diversified the format but did not increase the volume
of patient messages. A study of a triage-based e-mail system, however,
found that e-mail was an add-on to, not a substitute for, phone or in-
person communication and did not improve overall efficiency. However,
e-mail users were younger, more educated, less sick, and less likely to
call or visit and until then may not have been served by other communi-
cation methods (Katz et al., 2003).
Another common concern is patients’ ability to use e-mail appro-
priately and to distinguish between non-urgent and urgent conditions
(Houston et al., 2003). Yet content analyses of e-mail messages do not
substantiate these fears. White, Moyer, Stern, and Katz (2004) found
no e-mails containing urgent messages, and only 5% with overly sensi-
tive content. Most messages were formal, concise, and courteous, and
directly related to medical issues, and only 43% required physician
follow-up. Common topics were information updates, referral requests,
appointments, prescription renewal, tests, and health questions. Anand
292 Health Communication in the New Media Landscape
and associates (2005) also found relatively high levels of etiquette in
e-mail communications, with no mention of urgent or acute problems
and a focus on medical questions or updates, subspecialty evaluation,
and administrative issues. Finally, reimbursement is also a common con-
cern among doctors. The adage “Time is money” is particularly appro-
priate in this case, as doctors fear that more patient e-mails will take up
more time, and hence this service should somehow be paid for (Patt
et al., 2003).
Telemedicine
Although telemedicine has existed for 20 years, new media are changing
it by allowing information to be transmitted online or by various digital
devices, thus increasing affordability (Slack, 2001). Telemedicine offers
the benefits of connecting patients and physicians over long distances
and allowing underserved locations and populations access to care. It also
decreases time and travel (and hence cost) of specialty consultations.
So how does telemedicine influence physician–patient communi-
cation? In a study of an Internet-based telemedicine system for emer-
gency ophthalmologic consultation, Bar-Sela (2007) demonstrated that
the approach was reliable and preferred by patients. Diagnoses by tele-
medicine and by the ophthalmologist were in full agreement, and 98% of
patients preferred the telemedicine exam. However patient preferences
seem to vary by condition. During periods of low uncertainty about their
health (health maintenance) or high uncertainty (crisis situations when
any physician access is appreciated), patients felt telemedicine was effec-
tive. During periods of moderate uncertainty (when medications need
to be changed), they preferred face-to-face consultation (Turner et al.,
2004).
Telemedicine consultations shift the locus of power between prac-
titioners. In face-to-face encounters, the physician sets the pace, while
in telemedicine the nurse does so by moving the monitor to the next
person. During face-to-face interaction, the doctor can hurry the visit
through nonverbal cues, but in telemedicine the nurse determines when
all the questions have been resolved (Turner et al., 2004). Telemedi-
cine changes the dynamic of the clinical encounter for the patient as
well. Patients thought they approached telemedicine differently than
face-to-face encounters, but a content analysis of their conversations
found no significant differences. Health care providers said they treated
the situations the same, but the physician was interrupted and called
Chapter 10 Improving Physician–Patient Communication 293
away during face-to-face visits, but not during telemedicine sessions
(Turner et al., 2004). Liu and associates (2007) found significant differ-
ences between telemedicine and face-to-face consultations: duration
was shorter, patient-centered behavior patterns (facilitation utterance,
empathy utterance, and praise-utterance) were fewer, and less data were
taken for the medical records via telemedicine. Still, patient attitudes
toward the encounters were similar. Doctors, however, were dissatisfied
with telemedicine because they thought too much time was spent on
small talk, and they had difficulty asking questions and connecting with
patients.
Online Health Information
Eight in 10 American Internet users (113 million) go online for health in-
formation. On a typical day in August 2006, 8 million Americans searched
for health information, which makes this activity as popular as paying
bills, reading blogs, and looking up a phone number or an address (Fox,
2006). Online health information benefits consumers by increasing their
knowledge and involvement with their own health (Hart, Henwood, &
Wyatt, 2004). Most people (51%–74%) feel reassured in their decisions,
confident to raise new questions with their doctor, relieved by what they
found, and eager to share their knowledge with others (Fox, 2006). How-
ever, barriers exist for a small but substantial group (10%–25%), who
feel overwhelmed to make an informed decision, frustrated by lack of
information or inability to find it, confused, and frightened (Fox, 2006;
Hart et al., 2004). Another aspect of gathering health information online
is that most consumers (75%) do not check the source or date of what
they find (Fox, 2006). These findings raise doubts about consumers’ con-
fidence in their evaluation skills.
Internet use influences the physician–patient relationship when
patients discuss the information they find with their physicians. When
that happened, physicians said quality made all the difference: accu-
rate, relevant information benefited, while inaccurate or irrelevant
information harmed health care, health outcomes, and their relation-
ship. However, the best predictor of a perceived deterioration in the
relationship was the physicians’ perception that he or she was being
challenged (OR = 14.9) (Murray et al., 2003). Physicians reported
patient benefits were more common than harms, but there were more
problems than benefits for doctors. The main challenges were the need
for longer clinical visits, patients’ difficulties evaluating the informa-
294 Health Communication in the New Media Landscape
tion, patients’ desire for new and unavailable treatments, and patients
trusting the Internet more than their doctors (Potts & Wyatt, 2002).
Patient perceptions of physician authority may also be at risk. Lowrey
and Anderson (2006) found that increased use of online health informa-
tion was positively correlated with patients’ belief that doctors are not the
experts on medical knowledge. Other significant variables were income
and perceptions of alternative medicine. However, this explained only
12% of the variance in perception. Other threats to physician authority,
according to the authors, were the profession’s specialization, popularity
of alternative medicine, and the perception that doctors value power and
money over patients.
The above findings suggest that online health information is mostly
disadvantageous, especially for physicians, but the implementation of
Web-based information prescriptions could change that. An information
prescription is the prescription of “focused, evidence-based information
to a patient at the right time to manage a health problem” (D’Alessandro,
Kreiter, Kinzer, & Petersonet, 2004, p. 857). Such prescriptions satisfy
patients’ need for more knowledge in the same way as general health
Web sites but also meet physicians’ standards of quality, consistency, and
relevance. Most patients (65%) who got them visited the Web site within
a week, and after a reminder, compliance increased by 45% (Ritterband
et al., 2005). Other studies confirm the high demand among patients for
health information guidance (Rice & Katz, 2006; Salo et al., 2004).
Online consultations allow consumers to contact previously unknown
physicians with health questions. Users most often discussed specific
symptoms and requested a diagnosis or a second opinion, information
on a disease, or information on a treatment or drug (Umefjord, 2006).
Reasons that patients cited for choosing this option were the conve-
nience (52%) and anonymity (36%) it offered, their own doctor was too
busy (21%), they lacked time or had difficulty getting an appointment,
they felt uncomfortable at a clinic, they appreciated the affordability of
this option, they felt discontent with previous doctors, they felt their
concerns were embarrassing, and they had a preference for written
communication.
Other Digital Technologies
New media will continue to influence physician–patient communication
as they penetrate the health care field. Portable media players, wireless
Chapter 10 Improving Physician–Patient Communication 295
handheld devices, blogs, and wikis have gone mainstream and are gradu-
ally being adopted by the medical field.
Portable media players assist medical education in the University of
Michigan School of Dentistry and other universities across the country
(Boulos, Maramba, & Wheeler, 2006; Trelease, 2006). The University of
Michigan has gone one step further and introduced this technology into
physician–patient communication by giving patients iPods with video
messages that provide an orientation to the visit while they wait (John-
son, 2007). The Cleveland Clinic offers its patients online podcasts and
videocasts on various health topics.
Cell phones have also influenced communication. In some clinics
in Kansas City, Missouri, patients receive a phone message whenever
their appointment is delayed, which can decrease time spent in wait-
ing rooms. Chin (2005) concluded that the cell phone has “promising
benefits” for the physician–patient relationship after examining patients’
postoperative calls to their surgeon. Only 17% of all calls were to the sur-
geon’s cellular phone, and 80% of them were during business hours, and
most were urgent. But while the surgeon’s cell phone was used sparingly
and mostly for emergencies, giving the number created the impression
among patients that the doctor was truly concerned with their care and
outcomes.
PRACTICAL AND OPERATIONAL CHALLENGES OF
NEW MEDIA
While new media could potentially improve physician–patient commu-
nication, they also pose some practical and operational challenges for
physicians. These include the establishment of and adherence to guide-
lines for communication, reimbursement regulations, possible legal
ramifications, and continued adherence to prior ethical standards.
Guidelines
The American Medical Association (2002) guidelines for electronic com-
munication state that new technologies should never replace the crucial
interpersonal contact that is the basis of the physician–patient relation-
ship but rather enhance it. The guidelines cover communication, medical/
legal, administrative, and ethical standards. Communication guidelines
include establishing turn-around time for messages, informing patients
296 Health Communication in the New Media Landscape
about privacy issues, establishing the types of transactions to be cov-
ered, informed consent, and ways to terminate an e-mail relationship.
Guidelines have also been created by the eRisk Working Group, a con-
sortium of 30 medical malpractice carriers, the AMA, and multiple na-
tional, state, and local medical societies. But while guidelines exist, they
are seldom followed. Brooks and Menachemi (2006) reported that the
most commonly practiced rule (48%) was printing the e-mail and plac-
ing it in the patient’s chart, followed by informing patients about privacy
issues (36%). Adherence to additional rules occurred in less than 25%
of cases, but frequent users of e-mail were more likely to follow five or
more guidelines.
Reimbursement
The Center of Medicare and Medicaid Services has developed reim-
bursement guidelines for telehealth and e-consults, but physicians
should be aware of what can and cannot be submitted as compliant ser-
vices. For example, telehealth is reimbursed by Medicaid, but the rules
are different for each state. Third-party payers often mirror government
payers for allowable services but may also have their own reimburs-
able services. In terms of medical codes for identifying, tracking, and
reimbursing for telemedicine, some states use modifiers to the existing
Physicians’ Current Procedural Terminology codes such as “TM” and
“TV.” Physicians need to know each payer’s rules and regulations, which
adds an administrative burden and additional expenses to their practice
and has the potential to increase the cost to the patient. Still, the “quiet
revolution” has already begun, according to Stone (2007), and Aetna,
Cigna, and others now reimburse physicians for Web consultations in
Florida, California, Massachusetts, and New York.
Ethical and Legal Issues
Each new communication medium raises its own liability concerns.
When telemedicine is used, visual evidence of the visit is captured for
future review. If such an encounter is later seen by non-authorized
individuals, the question of informed consent becomes pertinent
(Flemming, 2008). Privacy and security concerns have been expressed
in regards to e-mail as well (Katz et al., 2003; Moyer et al., 2002).
Unsecured, delayed, or lost e-mail can be opened by outsiders. In-
sufficient protections can subject patients to possible embarrassment,
Chapter 10 Improving Physician–Patient Communication 297
social stigma, and discrimination (Hodge, Gostin, & Jacobson, 1999).
The security breaches of databanks and the private data collection in-
dustry that collects, analyzes, and sells consumer information are ad-
ditional factors for concern (Anderson, 2007). Hodge and colleagues
make the following recommendations for legal reform in regards to
health information privacy: (1) recognize that identifiable health in-
formation as highly sensitive, (2) provide privacy safeguards based on
fair information practices, (3) empower patients with information and
rights to consent to disclosure, (4) limit disclosures of health data ab-
sent consent, (5) incorporate industry-wide security protections, (6)
establish a national data protection authority, and (7) provide a na-
tional minimal level of privacy protections.
IMPLICATIONS FOR THE FUTURE
In evaluating new media’s impact on physician–patient communication,
we are reminded of Harris (1995), who wrote, “Just as more isn’t neces-
sarily better health care, more technology is not necessarily the answer
to the health care dilemma” (p. 3). We see new media not as more tech-
nology but as an opportunity to improve physician–patient communica-
tion, provided they are used with an understanding of their strengths
and limitations.
The above review of the empirical literature shows that some of
new media’s strengths are also their weaknesses. E-mail may be a time-
saver for patients but is potentially time consuming for physicians. It
enables psychosocial and FYI messages from patients but gets blamed
for depersonalization. Patients prefer telemedicine for some health
conditions, but not for others. While these findings seem confusing at
best, the key to understanding them lies in one of the unique features
of new media: customization. Offering different features to different
people is new media’s strongest selling point. But while customization
benefits the individual, it contradicts standardization and optimization
in the health care industry, and this conflict may impede widespread
utilization.
New media offer challenges, but the established and potential ben-
efits may outweigh them. The expansion of communication into a pre-,
during, and post-visit continuum will improve information flow and
consistency of care, especially for chronic illnesses that require long-
term attention. Text messages could improve compliance by reinforcing
298 Health Communication in the New Media Landscape
physician authority and the value of treatment after the visit when the
doctor’s influence begins to wane and the influences of the social envi-
ronment remain strong (Pendleton, 1983). Another controversial conse-
quence of new media, online health information, can be turned into a
tool for health education. The literature has demonstrated that patients
are eager for information guidance and physicians need to respond to
these needs. Research has shown that contrary to physician concerns,
patients do not use e-mail for urgent messages or abuse the privilege of
having their doctors’ cell phone number. The evidence presented earlier
suggests that a major barrier lies within physicians and the industry as a
whole.
The adoption of new media ultimately depends on both the industry
and the individual physician. Such an adoption will create an expand-
ing market for new services. Pre-visit services such as payment regis-
tration, scheduling, medical information/questionnaires, and real-time
notification of clinic delays and post-visit services such as customized
Web sites, automated disease management systems, secure messaging,
and notification of results, are technologically feasible, but technology
is not the major roadblock to their adoption. Instead, the creation of
appropriate guidelines, regulations, and safeguards is probably the big-
gest determinant of whether new media successfully enter the health
care industry. But while we look at the industry for direction, we should
not forget about individual responsibility. One example is in the already
existing comprehensive guidelines for electronic communication, which
get little attention among physicians. We need to stress the inevitabil-
ity of the adoption of this technology. Consumers have been using new
media with the banking, hospitality, airline, information technology, and
news industries, and it is natural that they would expect the same from
the health care industry. Issues of privacy, confidentiality, and security
are pertinent to those businesses as well and have somehow been
surmounted.
Communication through new media is rapidly becoming the norm
rather than the exception, and physicians and the health care industry
need to adapt to these changes. We say this while acknowledging that
technology is not a one-size-fits-all tool (Flemming, 2008) and patients
will benefit unequally. We also agree with Slack (2001) that the idea of
new media is not to replace the doctor. Instead, we see new media as a
tool that will help the physician communicate better with patients in an
environment of increasing time demands, workloads, and numbers of
patients needing long-term care.
Chapter 10 Improving Physician–Patient Communication 299
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303
11
Across the long and complex history of advances in all forms of informa-
tion and communication technologies, one truth has remained—literacy
is key to success. The continuing importance of literacy, despite dra-
matic changes in technological interfaces from the pencil to the portable
computer, reveals the adaptability and generative nature of the uniquely
human skill of making meaning from symbols.
Literacy skills play an important role in health as well. The recogni-
tion of health literacy, and its potential to improve health and quality
of life, began slowly but is rapidly growing. Over 30 years of evidence
shows that a significant portion of the U.S. adult population has difficulty
accessing, understanding, and using information about health (Institute
of Medicine, 2003a; Nielson-Bohman, Panzer, & Kindig, 2004; Rudd,
2002; Schwartzberg et al., 2004; Zarcadoolas, Pleasant, & Greer, 2006).
A disproportionate number of members of ethnic minorities and Whites
of low socioeconomic status have a higher risk of poor health and poor
living environments as well as risk from environmental health hazards.
This reflects the often co-occurring realities of social and environmental
injustice as well as low literacy and health literacy.
The National Assessment of Adult Literacy indicates that 88% of
the country—nearly 9 of 10 adults—are below the “proficient” level in
health literacy (Kutner, Greenberg, Jin, & Paulsen, 2006). According
Health Literacy in the
Digital World
CHRISTINA ZARCADOOLAS AND
ANDREW PLEASANT
304 Health Communication in the New Media Landscape
to the National Assessment of Adult Literacy’s evaluation scheme, this
means that 12% of the participants were “proficient,” meaning that they
could generally (but not necessarily always):
Find the information needed to defi ne a medical term within a
complex document
Judge information to decide which legal document applies to a
specifi c health care situation
Calculate an employee’s share of health insurance costs for a year
using a table based on income and family size
The finding that 3% of the participants in a sample of approximately
19,000 adults could not complete the assessment in English or Span-
ish and were excluded from the results compounds concern (Kutner
et al., 2006). Further, over 300 studies have demonstrated that most
health materials are beyond the comprehension skills of most Ameri-
cans (Rudd, Moeykens, & Colton, 2000). Taking that evidence base into
consideration, it is clear that the so-called proficient level may be only
just sufficient to successfully navigate the health care system and is not a
widely shared skill level in the United States.
A variety of studies and methodologies report that individuals with
low health literacy often experience poor adherence to medical regimes,
poor understanding of the complex nature of their own health, lack
of knowledge about medical care and conditions, little understanding
of medical information, low understanding and use of preventive ser-
vices, poorer self-reported health, increased hospitalization, increased
health care costs, and poor health status (Nielsen-Bohlman et al., 2004;
Schwartzberg, VanGeest, & Wang, 2005).
In this chapter we discuss the important intersection between health
literacy and the fairly recent emergence of information and communica-
tion technologies as an access point to health information, care, and ser-
vices. We introduce health literacy as a critical analytical tool to explore
issues of health communication in the digital world by discussing two case
examples: geographic information system maps for emergency preparedness
and electronic medical records, specifically those intended for patients.
DEFINING HEALTH LITERACY
Health literacy is the wide range of skills and competencies that people
develop to seek out, comprehend, evaluate, and use health information
■
■
■
Chapter 11 Health Literacy in the Digital World 305
and concepts to make informed choices, reduce health risks, and in-
crease quality of life (Zarcadoolas, Pleasant, & Greer, 2003, 2005, 2006).
These skills allow individuals to use information to understand and adapt
to new situations as they emerge.
Health literacy is the dynamic interplay of literacies in fundamental,
scientific, civic, and cultural domains and the context those skills are
used within. Thus, health literacy is a critical characteristic in profes-
sionals (e.g., the ability to communicate using health literacy skills) and
the public alike.
Fundamental literacy refers to the skills and strategies involved in
reading, speaking, writing, and interpreting numbers. Among adults in
the United States, fundamental literacy skills are generally poor (Kirsch
et al., 1993; Niels-Bohman et al., 2004). Low fundamental literacy in the
United States and around the globe continues to be a critical yet often
ignored social determinant of health inequities. This is equally true of
accessing, understanding, evaluating, and using health information and
health systems.
Differences in fundamental literacy cause a frequently encountered
mismatch between the way information about health is generally pre-
sented and the abilities of many Americans to find, understand, evaluate,
and use that information. For instance, health information uses unnes-
sarily complex medical terms such as “influenza” (versus “flu”), radiology
(versus “where to get an x-ray”), “sodium” (versus “salt”), and “myocar-
dial infarction” (versus “heart attack”). Despite growing awareness of
this disconnect and its importance, one all too frequently encounters
written and spoken information at the 12th-grade level or higher from
the health and allied professions when most Americans’ skill level is
at the 8th-grade level or lower (Kirsch et al., 1993; Nielsen-Bohlman
et al., 2004). With adequate political will, this problem is resolvable, and
that resolution will have the potential to produce cost savings, efficiency
gains, and better health outcomes.
Science literacy refers to levels of competence with science and tech-
nology, including some awareness of the scientific process. This specifi-
cally includes knowledge of fundamental scientific concepts, the ability
to comprehend technical complexity, and an understanding of scientific
uncertainty and the fact that rapid change in the accepted science is pos-
sible. For instance, on an advanced level, it takes a solid understanding
of how science works to be able to accept and understand how clinical
guidelines once taken as truth, for example in regard to hormone replace-
ment therapy, can rapidly change in the light of new findings. Improving
306 Health Communication in the New Media Landscape
health literacy skills involves preparing communicators to better explain
this process. As a result, the public can be better prepared to understand
and evaluate such changes in the underlying science without a loss of
trust in the health care and health research system.
Civic literacy refers to abilities that enable citizens to become aware
of public issues and to be involved in the decision-making process. This
includes media literacy skills, knowledge of civic and governmental pro-
cesses, and an understanding that individual health decisions can affect
public health. Skills in the civic domain directly relate to an individu-
al’s capacity to effectively judge sources of information and to navigate
issues of power and inequity as they manifest in daily lives. This includes
an understanding that one’s personal actions can influence the health of
others and the community at large. At its core, civic literacy skills pro-
vide the foundation for individuals’ abilities to empower themselves to
play a role in society (Freire, 1980).
Cultural literacy refers to the ability to recognize and use a group’s
collective beliefs, customs, worldviews, and social identities in order to
interpret and act on health information. For example, certain cultural
groups hold physicians in particularly high esteem, and a patient ques-
tioning a doctor would be seen as disrespectful. Another example would
be the culture of youth, which is often characterized by high-risk behav-
iors and a worldview dominated by a sense of immortality. Cultural liter-
acy includes a recognition on the communicator’s part of the importance
of framing health information to accommodate such powerful cultural
understandings, and skill in doing so (Kreps & Kunimoto, 1994).
Unfortunately, common misperceptions limit people’s ideas of cul-
ture to notions of race and ethnicity. While race and ethnicity may reveal
cultural differences, culture is more accurately understood as an impor-
tant element contributing to variations in communities of practice within
society. Thus, an individual may be part of several cultures at once. For
instance, a surgeon is part of the culture of surgery within a hospital but
may also be part of a Hispanic culture and a political culture of conser-
vatism and a member of the culture of ballroom dance—all can indicate
different cultural belief systems.
While the fundamental, scientific, civic, and cultural domains all
affect health literacy, we will focus specifically on the “fundamental
literacy” domain of health literacy for the remainder of this chapter.
Including analysis from the other domains would exceed available space
limitations so we leave that analysis for future reporting.
Understanding the mechanisms of health literacy creates a power-
ful opportunity to focus on both advancing the public’s health literacy
Chapter 11 Health Literacy in the Digital World 307
and tailoring communication and technologies to meet the literacy and
health literacy needs of the public. Both these foci will help people help
themselves make better decisions, improve health and quality of life,
and reduce inequities in health. This is as true in the digital world as it is
in more traditional forms of mass media and communication. Improving
health literacy has the potential to influence every aspect of a person’s
interactions with the health care system, from interpersonal and pre-
dominantly verbal interactions with a physician or nursing staff to the
complex tasks of negotiating the vast sea of (often incorrect or mislead-
ing) information about health found on the Internet.
In earlier research, we clearly demonstrated the many challenges
that low-literate adults face when navigating the Internet (Zarcadoolas,
Blanco, Boyer, & Pleasant, 2002). In addition to the challenges posed by
unfamiliar technology, the way content is presented can create further
barriers related to both content and navigation. For example, much of
the current Web content about health requires a relatively high level of
health literacy and most users can easily recount many early difficulties
in learning to navigate the Web.
MAPPING OUR WAY TO THE NEXT DISASTER? GIS,
EMERGENCY PREPAREDNESS, AND HEALTH LITERACY
Following several events of national and international significance, in-
cluding the 9/11 attack, and recent natural disasters such as Hurricanes
Rita and Katrina, there has been a growing nationwide effort to deliver
emergency preparedness information and training to residents. Accord-
ingly, the New York City Office of Emergency Preparedness (2007)
named the New York City Coastal Storm Plan presented to the public
“Ready New York: Hurricanes and New York City Aug–Sept. 2006.”
The plan’s central visual is a geographic information system (GIS)
data map indicating what areas of the city are designated hurricane
evacuation zones, the degree of hazard in various zones, and the loca-
tion of evacuation centers. The map was made available to city resi-
dents on a Web site and through a mass mailing. Despite the growing
popularity of GIS as a tool in public health, very little research has been
done on the abilities of lay publics, including low-literacy populations,
to read and use GIS data as it is presently being displayed to them. In
the following section we will examine the uses of GIS, their accessibil-
ity to low-literate publics, and the implications for Ready New York and
other projects like it.
308 Health Communication in the New Media Landscape
What Is GIS?
A geographic information system is a database system with software that
can analyze and display data using digitized maps and tables for planning
and decision making. A GIS can assemble, store, manipulate, and dis-
play geographically referenced data, tying these data to points, lines, and
areas on a map or in a table. GIS can be used to support decisions that
require knowledge about the geographic distribution of people, hospi-
tals, schools, fire stations, roads, weather events, the impact of hazards/
disasters, and so forth. Any location with a known latitude and longi-
tude, address, or other geographic grid system can be a part of a GIS
(Lauden & Lauden, 2000). GIS can include multiple layers of data (e.g.,
geographic information, population data, health or environmental data,
construction information). The maps are frequently used as a method of
constructing an argument or illustrating alternatives when communities
must make a decision.
Geographic information systems can create ideal platforms for the
convergence of disease-specific information and their analyses in rela-
tion to population settlements, surrounding social and health services,
and the natural environment. They are highly suitable for analyzing
epidemiological data, as they reveal trends and interrelationships that
would be more difficult to display in tabular format. GIS allows policy
makers to easily visualize problems in relation to existing health and
social services and the natural environment and so more effectively
target resources (Centers for Disease Control and Prevention, 2006).
GIS maps have become a ubiquitous means of analyzing and presenting
health and emergency information at the global, federal, and state levels
(Centers for Disease Control and Prevention, 2000, 2006, 2007; Federal
Emergency Management Agency, 2004; National Library of Medicine,
2006; World Health Organization, 2006). Significantly, 80%–90% of all
government databases, including public health, contain geo-referenced
information (Cheves & Wang, 2004).
Simultaneously, GIS maps are becoming a common way of commu-
nicating information to lay publics (Federal Emergency Management
Agency, 2004; FloridaDisaster.org, 2008; New York Office of Emer-
gency Management, 2006). GIS maps are frequently used by federal
and state agencies, the media, academic communities, and community
agencies working on health and environmental issues (CECHI, 2005;
West Harlem Environmental Action, n.d.). The Center for Disease Con-
trol’s GATHER (Geographic Analysis Tool for Health & Environmen-
tal Research) is a premier example of the provision of pertinent public
Chapter 11 Health Literacy in the Digital World 309
health GIS information to the public health community and the general
public. (More about the GATHER can be learned at http://gis.cdc.gov)
These uses of GIS require audiences to understand elements such
as the distribution of risk across space and the concentration of elevated
risk in particular communities. For example, GIS has been used in the
Gulf states as an information tool for “identifying sources and routes of
contaminants, evaluating the potential for future exposures, assessing
human exposures that occurred in the immediate aftermath of the hur-
ricanes, and assessing the immediate and longer term health impacts
associated with these exposures” (National Institute of Environmental
Health Sciences, n.d.).
The current trend in GIS is Web-based mapping. This capability can
allow users to view an already created map, or create maps based on their
own specifications, on their personal computers. “Web-based mapping
is expected to widely expand the use of GIS in the workplace, in schools,
and in homes” (Federal Emergency Management Agency, 2004). An
example of the growing adoption of GIS technology as a teaching and
community advocacy tool can be seen with West Harlem Environmental
Action. This leading environmental justice organization began creating
and posting GIS maps on its Web site in 1999 in order to allow residents
to work with the health and pollution data that provided them with an
understanding of the relationship between the two and their advocacy
and policy implications (West Harlem Environmental Action, n.d.).
GIS and Ready New York
As stated earlier, New York’s Office of Emergency Management devel-
oped and circulated an 8.5×11-inch printable PDF map in July of 2006
to be used by the public in the case of a hurricane-related evacuation.
The plan attempts to tell New Yorkers about the level of hurricane haz-
ard in their neighborhood and where to go if they need to evacuate. The
brochure version of the plan was mailed to all residents living in desig-
nated hurricane evacuation zones in New York City. The plan includes a
large fold-out map indicating what areas of the city are designated hur-
ricane evacuation zones, degree of hazard, and where evacuation centers
are located in these areas (see Figure 11.1).
The readability of this map was tested in a study conducted in East
Harlem by the Mount Sinai School of Medicine (Zarcadoolas, Boyer,
Krishnaswami, & Rothenberg, 2007). According to the 2000 U.S. census,
close to 260,000 people with an average household income of approxi-
mately $20,000 a year reside in East and Central Harlem ($18,564 for
http://gis.cdc.gov
310 Health Communication in the New Media Landscape
East Harlem and $21,508 for Central Harlem) (New York City Depart-
ment of City Planning, 2001). More than a third of the residents are
living in poverty.
Almost a third of residents in East Harlem (31%) and Central Har-
lem (22%) report being in fair or poor (versus very good or good) health
(Olson, 2006). In 1996, Central Harlem had the highest crude death rate
of any health district in New York City, at 14.1 per 1,000 people compared
to a citywide rate of 9.1 per 1,000 (New York City Department of Health
and Mental Hygiene. 2006). In 1996, there were 423.4 coronary heart
Figure 11.1 Manhattan hurricane evacuation zones (original map in color).
Chapter 11 Health Literacy in the Digital World 311
disease deaths per 100,000 people, in contrast to the Healthy People
2000 goal of 115 for Blacks. There are higher rates of sexually transmit-
ted infections, adolescent pregnancies, depressive disorders, childhood
asthma, and homicides as well.
Harlem is a very diverse community with a wide range of ethnic
backgrounds and languages spoken. Eighteen percent of East and
Central Harlem residents are not proficient in English (New York City
Department of City Planning, 2001). Of those who do not speak En-
glish, 82% speak Spanish (Healthy Harlem, 2006). Because of the high
density of Hispanics, the southern portion of East Harlem is referred
to as Spanish Harlem or El Barrio. Harlem also has very low literacy
levels. Forty-six percent of East Harlem residents and 33.5% of Cen-
tral Harlem residents have not graduated from high school (New York
Department of Health and Mental Hygiene, 2006). Community resi-
dents of Harlem have a rich history of organizing to promote health
and challenge environmental exposures that pose health hazards in the
community but have often lacked access to the technical and informa-
tional resources to help them in their efforts to understand and priori-
tize health risks.
Methods
The study design was a cross-sectional survey consisting of face-to-face in-
tercept interviews throughout the community. To be eligible, participants
had to be 18 years or older. There were 178 residents in a convenience
sample (134 English speaking, 44 Spanish speaking), interviewed in vari-
ous locations throughout East and Central Harlem. Spanish-language in-
terviewers were staff of the health education department, bilingual native
speakers of Spanish with extensive experience in community relations.
English-language interviewers were trained ethnographers supervised by
a sociolinguist specializing in health literacy.
Survey questions required the respondents to refer to an enlarged
version of the CSP Hurricane Evacuation Zone map. Other survey
questions sought demographic information on the respondents’ age,
sex, educational attainment, language, and length of time living in New
York City, and information on respondents’ current knowledge of, atti-
tudes toward, and preparedness for emergency situations. Surveys were
administered during August and September of 2006. Of the respon-
dents, 40% ( n = 72) had not graduated from high school, a number very
representative of the U.S. census statistics, which suggest that 39% of
312 Health Communication in the New Media Landscape
East and Central Harlem adults have not graduated from high school
(New York City Department of City Planning, 2006).
Findings
Findings reveal that the current map used to communicate vital infor-
mation about hurricane emergencies to the public is not readable and
usable by a significant portion of the Harlem community. The vast ma-
jority (73.9%) of surveyed residents who had not completed high school
could not correctly determine if they lived in a hurricane evacuation
zone, which zone they lived in, or the correct location of the nearest
hurricane evacuation center. Furthermore, 40% of those who had not
graduated from high school could not use the map to locate where they
lived (see Table 11.1). After education was adjusted for, the other demo-
graphic variables (age, sex, language, and length of time living in New
York City) were not significant.
Those who had completed high school were over nine times more
likely than those who had not graduated from high school to cor-
rectly identify which evacuation zone they lived in. Yet even nearly half
of those who had higher education (high school or some college) said
they did not know how to get to the closest evacuation center.
When it comes to residents’ trust in emergency preparedness officials,
there is also reason for concern. Even before residents determined that
the map was not clear and decipherable, 40% said that they do not (“some-
what,” “a little,” “not at all”) trust emergency directions from city officials.
Launched in July 2003, the Office of Emergency Management’s
Ready New York is a preparedness campaign aimed at helping New York-
ers prepare for all types of emergencies. The ongoing campaign includes
hazard specific brochures, public service announcements for radio and
television, a speaker’s bureau, print and outdoor advertising, and commu-
nity emergency response teams. As part of Ready New York, New York-
ers have been urged to have a “Go Bag” ready. This is a collection of items
residents should have packed and ready in the event of an evacuation.
In terms of overall preparedness, only 16% of all those surveyed said
they have a Go Bag ready in their home. Also, many of these individuals
were able to list very few items that are recommended to be included
in the bag. While 69% said they would include water in a Go Bag, 64%
included non-perishable food, and 44% a flashlight, only about a third
said they would include medicine, and about 24% thought they were
supposed to include important documents.
Chapter 11 Health Literacy in the Digital World 313
ABILITY TO ANSWER QUESTIONS CORRECTLY WHILE LOOKING AT MAP
(BASED ON EDUCATION LEVEL)
EDUCATION
STATUS
INCORRECT
n (%)
CORRECT
n (%)
ODDS RATIO
(CONFIDENCE
INTERVAL)*
Can you point
to where you
live?
Low education
High education
29 (40.3)
11 (10.7)
43 (59.7)
92 (89.3)
5.65 (2.58, 12.35)
1.0
Judging from
these maps,
do you live
in hurricane
evacuation
zone?
Low education
High education
51 (73.9)
31 (30.1)
18 (26.1)
72 (69.9)
6.58 (3.32, 12.99)
1.0
What zone do
you live in?
Low education
High education
57 (82.6)
34 (33.7)
12 (17.4)
67 (66.3)
9.35 (4.44, 19.61)
1.0
Which hur-
ricane evacu-
ation center is
closest to your
home?
Low Education
High education
46 (65.7)
27 (26.5)
24 (34.3)
75 (73.5)
5.32 (2.75, 10.31)
1.0
Do you know
how to get
there?
Low education
High education
57 (82.6)
47 (48.0)
12 (17.4)
51 (52.0)
5.15 (2.46, 10.75)
1.0
Low Education = Less than High School; High Education = At least High School
graduate / GED
*95% confi dence interval
Table 11.1
CASE STUDY: ELECTRONIC MEDICAL RECORDS
There is growing concern that patients need to be more involved in deci-
sions about their own health care. This concern is only compounded in
an era in which patient information is often fragmented across provid-
ers, medical institutions, and laboratories. As a result, there is a growing
314 Health Communication in the New Media Landscape
movement to create tools to help patients take a more proactive role in
their care. Electronic medical records (EMRs) in a wide variety of forms
have been adopted by provider practices, hospitals, insurers, and other
health facilities in great numbers over the last few years. These records
are used to track and manage patient care, improve health outcomes and
decrease health care costs, especially for the management of chronic
disease (Bodenheimer & Grumbach, 2003; Weingerten, Henning, Bad-
amgarav, et al., 2002).
The Institute of Medicine has called for all physicians to use elec-
tronic prescribing tools by the year 2010, and federal authorities have
stated a goal of 100% EMR use by the year 2014 (Bush, 2003; Institute
of Medicine, 2003b). In 2007 the National Governors Association part-
nered with Health Management Associates to survey states regarding
electronic health information undertakings and needs. All 42 states sur-
veyed indicated that e-health activities were significant in their states,
and almost 70% of states described e-health activities as very significant
(Smith et al., 2008).
An essential companion to the physician electronic record is the
patient health record (PHR/EHR). We will use the term EMR to refer
to all forms of patient-accessible electronic forms of medical records.
Various forms of patient health records now exist in great numbers.
Smart cards, electronic patient portals, and Web-based personal health
records are proliferating and attempt to bring together fragmented
information from multiple sources. The number of patient-oriented
EMRs that offer tailored educational materials or personal medical
information is growing, and the choices offer a wide spectrum of func-
tions for patients. These functions include accessing personal health
records, sharing health records (e.g., with designated family memb –
ers or caregivers), entering data into a health record, checking/filling
prescriptions, checking and making appointments, checking/paying
copayments, participating in support groups, accessing educational
materials for health-decision support and health self-assessment tools,
messaging with health providers, using diagnostic/therapeutic tools,
and signing up for reminders to support self-management of care.
For example, the New York City Department of Health and Men-
tal Hygiene, as part of a mayoral initiative to improve the quality and
efficiency of health care in New York City, is supporting the adoption
and use of an EMR primarily among providers who care for patients
who live in the areas of New York City that have the greatest health dis-
parities. The Department of Health and Mental Hygiene has established
Chapter 11 Health Literacy in the Digital World 315
a primary care information project to support the adoption and use of
state-of-the-art EHRs, especially among providers who care for the city’s
underserved and vulnerable populations (New York City, 2007 ).
Consumer self-management support is being designed through the
insertion of tools in the eClinicalWorks EMR. Providers may be sup-
ported in implementing and documenting shared decision making, goal
setting, and progress related to chronic disease and preventive self-care.
An electronic or printed summary of each encounter and plan may be
given immediately to the consumer. Self-management e-tools are based
on paper tools developed by the Department of Health and Mental
Hygiene’s Clinical Systems Improvement Team in collaboration with
New York City primary care providers. Consumers will be linked to the
EMR through a Web portal that can be opened with a secure password;
they may fill in structured information on demographics, health history,
and health goals that can be accepted into a progress note. Also, cur-
rent medications may be verified, and lab, radiology, and billing reports
may be viewed. Consumers may be alerted to care that is due and may
send and receive messages to request follow-up services or information.
Health education and community resource information will be acces-
sible via uploaded practice-specific documents or Web links.
The EMR and patient portal enhancements will build on the Depart-
ment of Health and Mental Hygiene’s Take Care New York initiative,
which has already distributed 2 million paper patient health records
(“passports”) to engage patients in becoming more involved in manag-
ing their own health (New York City Department of Health and Men-
tal Hygiene, n.d.). The initiative urges New Yorkers to get their colon,
breast, and cervical cancer screenings as needed and informs them about
10 core health issues, including smoking cessation.
However, both in New York City and nationally, there is very little
research on the actual usability or effectiveness of these new tools for
patient self-management, especially among at-risk populations that
already experience increased health disparities and, often, low health
literacy. Although not explicitly from a health literacy perspective, Win-
kelman, Leonard, and Rossos (2005) reviewed constraints embedded
in EMRs that limit their use by patients in self-directed disease man-
agement. Issues hindering access and usability of the information that
they identified include the lack of prioritization or use of patient vocab-
ularies in their structures, reflecting the fact that traditional medical
records as well as EMRs have been mainly designed for physicians, not
patients.
316 Health Communication in the New Media Landscape
Ross and Lin (2003) reviewed studies in which patients were given
access to their medical records, both paper based and electronic, and
they created a framework for evaluating the resulting positive and nega-
tive outcomes for both patients and providers. In addition to problems
that surfaced in many studies, they reported problems with vocabulary
and meaning. However, none of the studies looked specifically at the
health literacy load of the records.
HEALTH LITERACY LOAD ANALYSIS
A health literacy load analysis entails a structural and functional analysis
of a text for the purpose of clarifying the likely demands of the mate-
rial on health consumer/patient comprehension and use. Conducting a
health literacy load analysis entails coding, categorizing, and analyzing a
text in terms of health literacy assumptions and demands. The product
of the load analysis is a list of elements that can be tested for usability.
While the list of potential text elements is theoretically infinite, it is con-
strained by the function of the text, the context of use, and the intended
target user of the text.
The health literacy load analysis plays an important role because it
“unpacks” the text and requires the researcher to identify what linguis-
tic, reading, and interpretation skills are likely assumed and required
of the reader. Health literacy load analysis is adapted from text analysis
methods designed by Zarcadoolas, Pleasant, and Greer (2004, 2006) and
based on an elaborated model of health literacy.
The two examples of EMRs in Figures 11.2 and 11.3 present the
reader with a range of complex comprehension and use tasks. In each, the
fundamental literacy load of this information is high. The text alternately
refers to science, civic, and culturally framed knowledge. Examples of
health literacy skills and concepts assumed and therefore required of
users are:
Functions of a written record (fundamental literacy domain)
Function of a laboratory test as a health indicator (science literacy
domain)
Reliability of scientifi c tests (science literacy domain)
Acceptance and relevance of statistically defi ned notions of “nor-
mal” (cultural literacy domain)
Knowledge and skills of how to act on the information provided
(civic literacy domain)
■
■
■
■
■
Chapter 11 Health Literacy in the Digital World 317
One of the claims that has been made for EMRs is that these records
can be an aid to disease management and shared decision making between
provider and patients. For instance, in the record in Figure 11.2, the pro-
vider may set a goal for lowering LDL level over a 6-month period. From
a health literacy perspective, accomplishing that task would require that
the patient:
1. understand the concept of LDL,
2. understand existing guidelines for “healthy” LDL both in an epi-
demiological sense and in regard to his or her personal context,
Figure 11.2 Screen shot of My Health at Vanderbilt.
Figure 11.3 Excerpt from provider EMR after visit summary (Institute for Urban
Family Health, 2007).
318 Health Communication in the New Media Landscape
3. locate LDL information on the EMR,
4. understand how to interpret trend information,
5. understand what this information implies with respect to health
behavior, and ultimately
6. put that knowledge to action to help motivate positive behavior
change.
Similarly, a health literacy load analysis of the example in Figure
11.3 would predict that the average patient would have real difficulty
locating, understanding, evaluating, and using the highly condensed
medical language and health concept presented. Complexities include
vocabulary—“atrial fibrillation,” “congestive heart,” “rapid ventricular
response,” “EMT,” “NCT”—and scientific/medical concepts and infor-
mation—What might the foot drop be an indicator of? What would the
MRA be trying to diagnose?
The linguistic structure, informational content, and physical lay-
out of EMRs in their present iteration do not take account the well-
documented low fundamental literacy and low health literacy of the
adult U.S. population.
CONCLUSION
There is growing recognition that understanding the mechanisms of
health literacy in the realm of public health contexts is necessary to cre-
ate a safer, healthier public (Nielsen-Bohlman et al., 2004; Pleasant &
Kuruvilla, 2008; Zarcadoolas et al., 2005, 2006). Digital technologies are
universally assumed to offer the latest and greatest technological fix to
improve health communication, but many efforts are hampered by fail-
ures to address the core issues of health literacy. This is unfortunately
not a new phenomenon, but health literacy is continuing to take its place
as the primary concerns in health communication of all types.
There has been national attention given to ensuring the public has
clear and understandable emergency preparedness information, but our
analysis of the usability of GIS map information in the New York City
coastal storm plan raises serious doubts that information in this format is
effectively informing the public. As a result, it is likely that an estimated
160,000 residents of Central and East Harlem would not be able to find
the evacuation center closest to their home by using these specific hur-
ricane evacuation maps.
Chapter 11 Health Literacy in the Digital World 319
Improved maps can play an important role in presenting and advanc-
ing the public’s understanding of and engagement in a wide range of
health and safety information, from emergency preparedness informa-
tion to other epidemiologic information, such as asthma rates, diabetes
prevalence, and exposure to toxicants. Future research should focus on
analyzing the specific text and graphic complexity of GIS maps in order
to create more accessible, easy-to-read, and easy-to-use geographic infor-
mation system maps. These revised tools can then be added to a suite of
public health communications that may enable community members to
participate in more meaningful dialogue and informed decision-making
processes about public health and safety issues.
Ideally, an analysis of the health literacy load compares the health lit-
eracy burden of an informational resource to user characteristics. As dem-
onstrated in relation to electronic medical records, even a quick analysis
focusing on the fundamental domain of health literacy provides impor-
tant insights into potential problems users may encounter. Our analysis
is supported by others who have found that even health professionals
encounter similar problems with EMRs (Crosson, Stroebel, Scott, Stella,
& Crabtree, 2005). This is a process performed far too seldom, in part,
we suggest, because health organizations have not sufficiently invested
in the capacity to perform such analyses.
Health care communication in a digital world cannot sidestep
the demands of health literacy. Rather it increases the health literacy
demands placed on users. As the world moves toward personalized
electronic medical records, a host of issues emerge, but the question
of how understandable and accessible the digital information will be
underlies each and every issue. Every effort to use emerging informa-
tion and communication technologies to help people help themselves to
better their health has to pass through health literacy first. Therefore,
we conclude this chapter by arguing that continuing development of
EMRs and patient health records as well as the entire scope of digital
access to health information—without prioritizing a serious consider-
ation of the health literacy demands—can only sadly perpetuate the
already too-long history of top-down information provision that fails to
meet the desired communication outcomes and increases inequities in
health.
The same core issue remains, whether health information is pre-
sented via a digital or more traditional manner: do the materials as pre-
sented match the user’s skills, abilities, and level of knowledge so that
users can find, understand, analyze, and use that information to make
320 Health Communication in the New Media Landscape
better decisions about health? If developers of the digital world of health
and medical information are unable to directly and completely answer
that question, then the development needs to be reconsidered before
these implementations are launched.
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PART
III
Future Directions
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325
12
We live in an information age amid growing demands for instantly ac-
cessible information that is tailored to users’ needs and preferences and
accessible through countless forms of media. The demand for infor-
mation has burgeoned in the past few years; information about cur-
rent events and consumer products, scholarly materials, and health
information, to name only a few, can be accessed in the blink of an
eye. Availability of health-related information in particular has grown
exponentially through media outlets such as newspaper columns, maga-
zines with health-specific cover stories, and the emergence of Web sites
such as emedicine.com and healthcentral.com. Prior to the explosion of
information sources, people relied primarily on physicians to address
their questions and generally did not possess detailed knowledge about
various health conditions. Today there is a virtual glut of health informa-
tion and communication. This growth is partially demand driven, but
advances in technology also expand and alter the ways in which we ob-
tain information. These forces have combined to dramatically alter the
media landscape with respect to health communication.
Making the Grade: Identifi cation
of Evidence-Based
Communication Messages
E . SALLY ROGERS AND MARIANNE FARKAS
Preparation of this chapter was partially supported by the National Institute on Disability and Reha-
bilitation Research, Knowledge Dissemination and Utilization grant (Grant #H133A050006). The
views expressed in this chapter do not necessarily represent the views of NIDRR and are the sole
responsibility of the authors.
326 Health Communication in the New Media Landscape
Fueling this trend is the fact that individuals increasingly rely on the
Internet as a primary resource to address questions about health condi-
tions. In fact, the Pew Internet & American Life Project (2007) reports
that 86% of Internet users with a disability or chronic health condition
have looked online for health information and that those individuals are
“more likely than other e-patients to report that their online searches
affected treatment decisions, their interactions with their doctors, and
their ability to cope with their condition.”
Our focus in this chapter is on communication about mental health
and the use of that information by consumers, mental health organizations,
practitioners, and practitioner organizations (like the United States Psycho-
social Rehabilitation Services Association). We explore two fundamental
problems arising from the changing landscape of health communication.
The first is the question of how today’s lay users evaluate the quality of
health and mental health information at their disposal. Consumer availabil-
ity of voluminous information that is often technical and complex means
that users are primarily on their own to decipher and make use of the
information they locate. Complicating this concern is the finding from the
Pew Internet & American Life Project (2007) that only 14% of “e-patients”
(individuals living with a disability or chronic disease who go online) report
that they “always” check the source and date of health information they
find on the Internet. This is a potentially worrisome finding, especially for
individuals who may be in medical crisis, or who have heightened concerns
and needs relative to their health and mental health.
It is important that users make meaningful discriminations about
the credibility and value of health information, and to do so, they need
tools. There is also concern that much of the new knowledge in mental
health is not being utilized and has not filtered down to affect the lives
of individuals with mental health disabilities in meaningful ways. We
explore this “knowledge gap” and the growing need to examine health
information for quality and for relevance to users. Finally, we describe
our attempts to address these problems and the knowledge gap through
an innovative federally funded project.
THE KNOWLEDGE GAP
Research funds expended over the past few decades in health and men-
tal health have been primarily aimed at the creation of new knowledge
through basic and applied research, with little attention paid to the
Chapter 12 Making the Grade 327
ultimate use of that knowledge. However, as we gain a better understand-
ing of the barriers to the use of new information, we begin to understand
the need for proactive strategies to overcome them. Attempts to translate
research findings into health and mental health practice have suggested
that new knowledge often does not get utilized once research information
is available. Some have described this failure as the “know-do” gap (World
Health Organization, 2005) and the “Science-to-Service Divide” (National
Institute of Mental Health, 1999). Passive approaches to addressing this
gap are ineffective—resources and active planning to promote adop-
tion of information must be developed and undertaken in order for that
knowledge to be used in the real world (Grimshaw, et al., 2001; Suds-
awad, 2007). The National Institutes of Health, recognizing this prob-
lem, have begun funding “translational research” as a way of bringing
basic research findings to applied settings—that is, “practice informed by
science” (Vernig, 2007).
One of the common reasons for knowledge gaps is the difference in
perspectives that exists between individuals who generate new knowledge
(such as academics and researchers) and those who use new knowledge
(such as providers of services, advocates, and individuals with disabilities
and their family members). Participatory action research methods and
the emerging field of “knowledge translation” examine this gap, address
difficulties of facilitating change through new knowledge, translate new
knowledge into innovative services and practices, and promote the adop-
tion of health and mental health practices that result from promising
research (Selener, 1997; Sudsawad, 2007).
KNOWLEDGE TRANSLATION
Until recently, purveyors of knowledge and those conducting research
studies were expected only to engage in “knowledge transfer,” a simple
linear process by which research studies were conceived, planned, ex-
ecuted, and then made available to users to promote change (Landry,
Lamari, & Amara, 2001). In contrast, the emerging discipline of knowl-
edge translation argues that in order to ensure the use and adoption of
new information and research results, the creation of new knowledge
must involve early and frequent interactions between researchers and
potential users. Central to the distinction between knowledge transfer
and knowledge translation is the understanding that knowledge transla-
tion is not unidirectional, simple, or linear.
328 Health Communication in the New Media Landscape
The Canadian Institute of Health Research (2005) has defined knowl-
edge translation as “the exchange, synthesis and ethically-sound appli-
cation of research findings within a complex set of interactions among
researchers and knowledge users. In other words, knowledge translation
can be seen as an acceleration of the knowledge cycle; an acceleration
of the natural transformation of knowledge into use.” Within the con-
text of health research, knowledge translation aims to “to accelerate the
capture of the benefits of research . . . through improved health, more
effective services and products, and a strengthened health care system”
( Canadian Institute of Health Research, 2005). The World Health Orga-
nization (2005) has largely adopted this definition.
Professional journals and organizations provide traditional dissemi-
nation venues for new research knowledge. Occasionally, media outlets
publicize stories of particular interest to the lay public, but researchers are
expected to focus their dissemination efforts on other professionals and
are rewarded for doing so. This model of dissemination is limited because
it does not consider the potential needs of users, nor does it consider how
the changing media landscape is providing users with direct access to infor-
mation. Principles of knowledge translation suggest that individuals are
more likely to make use of or adopt new information when it is presented
in forms that are compatible with their needs and when the information is
available when they want and need it (Sudsawad, 2007). Obstacles to the
use of new information include the fact that users generally do not have
the knowledge or skills to understand complicated and often contradic-
tory scientific information and may be confused about the implications of
research findings for their own health or mental health problems.
Two examples stand out as illustrations of confusing and contradictory
health communications: the first was generated by the Woman’s Health
Initiative study, the largest trial of hormone replacement therapy con-
ducted to date. Prior to the study, physicians frequently recommended
hormone replacement therapy based on results of earlier observational
studies. But the initial and highly publicized negative results of the study
caused many women to abruptly terminate hormone replacement ther-
apy. Since then, more nuanced analyses of the Woman’s Health Initiative
results have caused great confusion and have also forced physicians and
women to reconsider the value of hormone replacement therapy (Men-
delson & Karas, 2007).
Similarly confusing have been reports about exposure to sunlight
and ultraviolet rays. For decades, physicians strongly urged patients to
protect themselves at all costs from sunlight, but newer research studies
Chapter 12 Making the Grade 329
are describing the potential benefits of exposure to sunlight to gener-
ate Vitamin D (Holick, 2007). These studies, often highly publicized in
the mainstream media, leave consumers confused and skeptical about
health communications.
NEED FOR KNOWLEDGE TRANSLATION
AND EVIDENCE-BASED PRACTICES
The large volumes of information available, the complex and seemingly
contradictory health messages, and the fact that much of our research
knowledge has not filtered down to users or translated into changes in day-
to-day health practices have led the National Institute on Disability and
Rehabilitation Research (2005) to invest heavily in programs of knowledge
translation after decades of funding disability-related research. The Cen-
ter for Psychiatric Rehabilitation has been funded to examine disability
research for quality and relevance to users and then to convert that re-
search information into usable, accessible information for individuals with
disabilities, their advocates, service providers, and family members.
Coupled with this recent focus on knowledge translation is the growing
emphasis on evidence-based practices. This parallel trend calls for medical
practices to be derived from an evidence base or a body of research that
informs health and mental health practices (Sackett et al., 1996; Stout &
Hayes, 2005). Entire health and mental health systems are being refocused
to deliver services that have an evidence base. The underlying premise of
evidence-based practice is that there is valuable research information and
expert opinion that can be brought to bear in a systematic way to provide
better services and treatment, and that health systems should only invest
their resources in treatments that can be demonstrated to work based on
research studies. It is clear, however, that we need methods with which to
systematically examine the quality of the health information that emanates
from research studies. Both the push toward evidence-based practices and
the emerging principles of knowledge translation have implications for the
communication of health and mental health information.
RATING THE QUALITY OF RESEARCH
Standards for determining the quality of research in health care began
taking hold about 2 to 3 decades ago. Driven by the need for protocols
330 Health Communication in the New Media Landscape
to guide medical care, health care providers often did not have a system-
atic set of decision rules to guide their treatment. Without best practice
or treatment protocols grounded in current research, individuals pre-
senting for health care with similar disorders can receive vastly different
treatments, some of which may be inferior to others (Goodman, 2003).
Studies indicated that the vast majority of health care treatments and
procedures were not based in evidence (Goodman, 2003). At the same
time, large bodies of research on the same health topic were accumulat-
ing, thus leading to a systematic process of synthesizing research (Starr
& Chalmers, 2003). With the evidence-based practices movement there
was growing awareness of the importance combing the research litera-
ture, synthesizing research that met a defined level of quality, having
medical experts agree on the meaning and conclusions of these synthe-
ses, and developing treatment guidelines from them.
As a result of this emphasis, we have witnessed in the past 2 decades
growing efforts to review and rate the quality of health research so that
the findings of rigorous and credible research studies in specific areas
can be synthesized. The proliferation of systems for rating the quality
of research prompted the federal Agency for Healthcare Research and
Quality (2002) to undertake an examination of these rating systems. The
agency concluded that three major criteria should be used to evaluate
new knowledge or research: quality, quantity, and consistency.
Quality in a research study suggests that the study was designed and
conducted, and the results were analyzed, in such a way to minimize
potentially misleading findings. While this may appear to be a straight-
forward concept, researchers frequently disagree about the methods and
procedures that must be used to ensure the quality of research studies.
The second criterion, quantity, has to do with the number of studies
conducted on a particular topic and the number of individuals involved in
those studies. The quantity of research studies is important since, except
in rare cases, one would not want to change a health practice based on one
or two studies with small numbers of participants. Having multiple studies
with large numbers of participants increases confidence in the findings.
The last criterion is consistency—the extent to which similar findings
are reported from multiple studies. A common complaint among users
is that different conclusions on the same topic are often reached (e.g.,
the hormone replacement therapy study), leading to confusion about
which findings are accurate or credible. The more consistent the find-
ings across several studies are, the more confident one can be in those
findings and the changes in treatment that those findings suggest.
Chapter 12 Making the Grade 331
Most systems that rate the quality of research rely ultimately (after
judging individual indicators of quality) on a rating hierarchy. Examples
of those ratings include scales ranging from “strong evidence” to “mod-
erate evidence” to “some evidence” to “no evidence,” and grades such as
A, B, C, D, with A representing excellent evidence. With these summary
scores, professionals and laypersons can receive evidence-based health
messages and a means by which to judge whether the prevailing evidence
for a health practice is excellent, good, fair, or poor. An example of how
this can be useful exists in the treatment of breast cancer. Research on
the use of mastectomies, lumpectomies, and other treatments for breast
cancer is available to assist both professionals and consumers needing
that health information. Both professionals and laypersons can examine
the quality of research information available for each of these treatment
modalities through research syntheses and can use that information to
make informed decisions about treatments. The growing need to ground
new treatments in the existing evidence and the need to rate the qual-
ity of that evidence means that health communications can be based in
high-quality research with consistent findings.
INITIATIVES TO RATE AND SYNTHESIZE HEALTH
CARE RESEARCH
The Cochrane Collaborative (www.cochrane.org) was developed in
response to this growing need to examine health research for quality
and then synthesize it. It is now the largest initiative evaluating health
care research in the world (Starr & Chalmers, 2007). To date, the Co-
chrane Collaborative has conducted hundreds of systematic reviews of
research studies on a host of topics ranging from use of acetaminophen
for migraines and the use of caffeine to treat asthma to the use of zinc
supplementation. The collaborative has grown exponentially in the past
10 years and now is a major source of information for health care work-
ers, researchers, and the public, providing “plain language” summaries.
Largely a volunteer endeavor, the Cochrane Collaborative’s goal is to
compile and periodically update critical reviews of all relevant random-
ized clinical trials in various health topics. In each case, the research
literature is scoured and experts rate and synthesize the findings, which
in turn facilitates the development of practice recommendations. Co-
chrane Collaboration reviews are highly regarded because of their com-
prehensiveness and completeness.
www.cochrane.org
332 Health Communication in the New Media Landscape
Systems for grading and synthesizing research in areas other than
health care have developed as well. These include the Campbell Col-
laborative (www.campbellcollaboration.org), a spinoff of the Cochrane
Collaborative that focuses on education and social and behavioral sci-
ences. In addition, there is the federally funded National Registry of
Evidence-Based Programs and Practices, which evaluates the quality
of mental health and substance abuse interventions and disseminates
that information through a Web site. The What Works Clearinghouse,
sponsored by the U.S. Department of Education, evaluates research on
educational curricula.
KNOWLEDGE TRANSLATION AND THE DISABILITY RIGHT
TO KNOW CLEARINGHOUSE
The Cochrane and Campbell collaboratives have largely focused their
efforts on synthesizing research based on clinical trials and have not fo-
cused intensively on disability-related research. Clinical trials require
individuals in a study to be randomly assigned to get the active interven-
tion, to get a placebo, or to receive a less desirable intervention. However,
because of the complexity of people’s disabilities and the interventions
needed to address them, it is often not possible to conduct randomized
clinical trials in disability research. Thus, disability researchers often rely
on studies that are not randomized and are non-experimental, obser-
vational, or correlational in nature. Such studies are often hypothesis-
generating studies rather than studies that test the effectiveness of one
intervention or drug over another (that is, hypothesis-testing studies).
While some researchers consider non-experimental research to be in-
ferior in quality to randomized clinical trials, such studies often can be
quite informative for the field and for users and providers of services.
Because there are few systems to grade or evaluate such non-
experimental research, we developed such standards as part of our
knowledge translation efforts. We will apply these standards to spe-
cifically chosen topics in the mental health disability area, rate the
research using these standards, synthesize the findings, and use that
information to develop information products for our users and to pop-
ulate our Web site (the Disability Right to Know). Most importantly,
we are being guided by the principles and practices of knowledge
translation to create evidence-based health messages that are targeted
to the needs of individuals with disabilities, their providers, advocates,
and family members.
www.campbellcollaboration.org
Chapter 12 Making the Grade 333
BEYOND RESEARCH QUALITY
Beyond the issue of the quality of health information is the issue of its
relevance to users. There are few services or products for which con-
sumers are unable to ascertain the value of what they purchase; health
care, unfortunately is often one. The difficulty of placing a value on
particular health care interventions has resulted in calls for the assess-
ment of consumers’ perceptions of value. Recently, physicians and other
health care providers have turned their attention to “value-based prac-
tices,” which requires the perceived value of a particular practice or in-
tervention, as well as its quality or effectiveness, to be taken into account
(Brown, Brown, & Sharma, 2005). Brown and colleagues contend that
value-based practices will lead to higher-quality health care because they
require a calculation of the importance of an intervention to an indi-
vidual compared to its presumed benefit — in essence, a personal cost-
benefit analysis. Similarly, in the disability and mental health fields, to
transform systems so they are “consumer-centric,” it is essential to take
into account how consumers value various services in addition to the ef-
fectiveness of those services (Anthony, 2005; Farkas & Anthony, 2006).
The principles of knowledge translation also suggest that to promote
the utilization of new knowledge we must examine not only its quality,
but also its potential value to those who are expected to use it (Lavis,
Robertson, Woodside, McLeod, & Abelson, 2003). Not all research is
meaningful to people or generates a “take home” message. Research
may have no apparent relevance or application to consumers or provid-
ers and thus may fail to achieve the expected utilization or hoped-for
impact (Stryer, Tunis, Hubbard, & Clancy, 2000). Without a clear sense
of the implications of research findings for their day-to-day functioning
and quality of life, users may not find relevance or meaning in them
(Ratzan, 2004). As noted earlier, simply making information available
(i.e., focusing on knowledge transfer versus knowledge translation) will
not necessarily result in utilization of that information (Farkas, Jette,
Tennstedt, Haley, & Quinn, 2003).
The notion that perceived value to the user is an important consid-
eration leads to the question of whether there are systematic methods
for assessing the value, meaning, or relevance of new information or
research findings. In fact, there are few such standards even in general
medicine (Gold, Siegal, Russell, & Weinstein, 1996). The lack of stan-
dard approaches to assess value contributes to the problem of provid-
ing target audiences with useful evidence-based health communications
and, in turn, promoting the adoption of new research findings.
334 Health Communication in the New Media Landscape
In general medicine, cost-utility formulas have been developed as
one way of calculating perceived value to the consumer and weighing
various health practices (Brown et al., 2005). These formulas attempt to
assign metrics (e.g., time lost or gained, money spent or saved, quality-
of-life measures) to interventions that have been found to be scientifi-
cally effective. In the disability and mental health fields, such formulas
may be overly restrictive, not applicable, or just difficult to apply. While
some cost-utility variables can be easily translated, other dimensions are
difficult to quantify.
In our knowledge translation grant, in addition to the scale for rating
research quality described earlier, we have developed a “meaning scale”
with assistance from users and consumers of mental health services. The
scale will allow users of information to review research findings relative
to their own perceptions of its relevance or value. Since the perception
of what is or is not valuable is subjective, we focused on three overarch-
ing factors from which meaning or value may be derived.
The first criterion by which we rate perceived meaning or value is
whether the research findings are, or can be, translated into relevant
information for day-to-day functioning so that they have personal impli-
cations for the user. This means that researchers must extend their typi-
cal interpretations of findings so that they have implications for people’s
day-to-day activities or roles. Without such interpretation it may be dif-
ficult for users to understand the value of the information to his or her
situation or interests.
The second criterion for rating perceived relevance to users has to
do with involvement of individuals with disabilities in the design, con-
duct, or interpretation of the research. Participatory approaches to the
conduct of research (Greenwood & Whyte, 1993) have been growing
in application and are now seen as having strategic purpose and value
beyond the studies themselves for utilization of the findings (Selener,
1997). Research that has been developed with the active input of a com-
munity of individuals has a greater likelihood of producing information
that is useful or meaningful to that community.
Finally, in terms of assessing meaning or relevance to the user,
research findings in the absence of tools with which the new information
can be used are less relevant to users. Research information may have
implications for new services or interventions, but researchers often do
not provide practical tools for implementation. For example, treatment
guidelines and protocols serve to support the application of new informa-
tion in the real world. Research studies that provide readers with links to
Chapter 12 Making the Grade 335
such tools are perceived as more immediately valuable or meaningful to
users than is research information that leaves its readers to create their
own mechanisms for implementation or use.
Understanding the meaning or perceived value of research informa-
tion to users, while difficult to measure, is critical to ensure that research
findings make their way to the public. Our attempts to develop a tool
that can be used to assess meaning are intended to increase the utiliza-
tion and reach of disability-related research information.
PROMOTING KNOWLEDGE TRANSLATION OF HEALTH AND
MENTAL HEALTH INFORMATION
Several important considerations come to mind regarding the promo-
tion of the translation of research-based information for persons with
disabilities in today’s electronic digital environment. First and fore-
most is the need to understand the access barriers to the Internet and
other electronic media confronted by individuals with disabilities. The
Pew Internet & American Life Project (2007) found that only about
half of those living with a disability or chronic disease go online, com-
pared to 74% of those without a disability. Similarly, in an analysis using
nationally representative survey data, Dobransky and Hargittai (2006)
found that people with disabilities are less likely to live in households
with computers, are less likely to use computers, and are less likely to
go online. However, when socioeconomic factors were taken into ac-
count, they concluded that at least some individuals with disabilities
(for example, individuals with hearing impairments) are not less likely
to use the Internet than the general population (Dobransky & Hargit-
tai, 2006). Furthermore, individuals with disabilities are unemployed in
greater numbers than the general population, meaning that they have
less capacity to purchase both computers and Internet access. Because
of their higher rates of unemployment, they also report that they have
less Internet access through their work (University of Montana, 2006).
Taken together, these data suggest that the socioeconomic and employ-
ment status of individuals with disabilities must be considered in the
promotion of health communication and knowledge translation using
electronic media and the Internet.
In addition, physical and cognitive impairments may create access
barriers for this population. Individuals with disabilities may have spe-
cial requirements for using computers and related technologies; this is
336 Health Communication in the New Media Landscape
especially true of individuals who are visually impaired or hard of hear-
ing or who have limited use of their upper extremities due to conditions
such as quadriplegia or rheumatoid arthritis. Individuals with disabili-
ties may have needs for assistive technologies that make the Internet
more accessible to them (World Wide Web Consortium, 2005). Making
these assistive technologies more affordable and available is one way to
increase Internet access for individuals with disabilities and to further
close the so-called digital divide (University of Montana, 2006).
In addition to considering issues of access, we can promote the mean-
ingful use of health information by finding meaningful ways to involve
users in knowledge translation efforts, beginning with the planning stages
of projects that are intended to culminate in transfer of knowledge. The
dictates of participatory action research cited earlier (cf. Selener, 1997)
provide guidance on how consumers with disabilities can help shape the
research agenda; in a similar fashion, consumers can help shape knowl-
edge translation agendas. Modalities ideally suited to increasing the
involvement of persons with disabilities in knowledge translation in this
digital environment are the increasingly popular online communities of
user groups with a common focus (Kim, 2000; Pew Internet & American
Life Project, 2001). Such communities could be constructed specifically
to provide a vehicle for input into knowledge translation efforts.
The widespread availability of disability-accessible information and
assistive technologies means that individuals with disabilities can inde-
pendently access information without relying on human assistance such
as that of a personal assistant or reader. Furthermore, individuals with
psychiatric disabilities who want to conceal their disabilities because of
stigma can peruse and use the Internet anonymously and without reveal-
ing their condition to others (Cook, Fitzgibbon, Batteiger, Grey, Caras,
Dansky, & Priester, 2005). Because of this ready and anonymous access,
the Internet has the potential to be a great equalizer and therefore to be
enormously liberating for many individuals with disabilities. The Web
and other electronic media can level the playing field by giving them
access to information that heretofore has only been available to medical
professionals and other privileged individuals.
However, vetting the voluminous health information remains a chal-
lenge (Bernstam, Walji, Sagaram, Sagaram, Johnson, & Meric-Bernstam,
2008). Individuals promulgating health information are considering dif-
ferent ways of rating Internet information for accuracy. However, the
extent to which the existing systems can rate the content of Web sites
for accuracy remains a question (Bernstram et al., 2008), as they tend to
Chapter 12 Making the Grade 337
focus on objective and factual questions that do not necessarily account
for accuracy (for example, quality criteria rating factors such as display of
authorship and date of creation).
This approach to rating health information accuracy can and should
be taken further to include a “seal of approval” approach, perhaps simi-
lar to the “Bobbie Approved” approach that is used to endorse Web sites
that reach an acceptable level of accessibility. Such a method for evalu-
ating health and mental health information that has reached a certain
standard of quality or rigor would mean that consumers with disabili-
ties could rely more heavily on that information in their health decision
making. The Medical Library Association (www.mlanet.org) provides
another model of how to assist health consumers locate quality informa-
tion by providing detailed guides especially for lay consumers, includ-
ing references to the top 10 most useful health Web sites and the top
10 cancer, diabetes, and healthy heart Web sites. Such guides can go a
long way toward assisting consumers who must sort through volumes of
often questionable health information.
SUMMARY AND CONCLUSIONS
Health information is voluminous and is accessible in a wide variety of
formats, those formats having expanded with the explosion of digitally
based communication. Often, however, health and mental health infor-
mation is complex and not easily evaluated for quality by the general
public and consumers of health services. To improve health and men-
tal health communications, there is a need for new knowledge to be
developed with utilization needs in mind, to be rated for quality and
synthesized, and to be assertively promulgated to users. Promulgation
can be enhanced by use of the Web and other digital common sys-
tems and devices. The recent emphasis on knowledge translation and
the movement toward evidence-based practices in health and mental
health care have both influenced the focus on quality research and the
understanding of how to promote utilization of research results. Health
and mental health professionals are more attentive to the need for pro-
viding evidence-based practices and for utilizing quality research to
guide their treatments.
Systems for rating research have been developed over the past
20 years, as have large-scale initiatives to review and summarize
research findings. These syntheses can and should serve as the basis for
www.mlanet.org
338 Health Communication in the New Media Landscape
accurate health communications. Disability researchers can learn from
these directions in the medical world and health care arena. That is,
disability research should be evaluated for quality and synthesized, and
its utilization should be assertively promoted. This will help advance
the National Institute on Disability and Rehabilitation Research (2008)
mission, which is “to generate, disseminate and promote new knowl-
edge to improve the options available to disabled persons.” Our knowl-
edge translation grant and activities are designed to help achieve this
mission.
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341
13
The new media landscape is part and parcel of the emergence of knowl-
edge societies. Knowledge with social, economic, and political implica-
tions is created at increasing rates by an increasing number of sources
and is the object of market transactions, management concerns, and
policy agendas (David & Foray, 2002; Steinmuller, 2002). The flow of in-
creased volumes of knowledge through media, especially new informa-
tion and communication technologies, not only makes more knowledge
available in more places and in more formats but also challenges the
stability of the meaning of the enormous volume of knowledge content
that is circulating (Steinmuller, 2002). The institutional arrangements
that have developed over time to create, validate, distribute, and apply
knowledge are being pushed to the limit. In many areas there seem to be
difficulties in ensuring that either existing knowledge or the best knowl-
edge is available when, where, and for whom it is needed. Health care is
one area in which the knowledge society has an enormous impact—both
with benefits, since many new ways to treat disease are created continu-
ously, and difficulties, since there is a growing consensus that the flow
of knowledge is not as smooth and stable as one might wish (Choi, 2003;
Davis et al., 2003).
Other chapters in this volume have addressed these issues from the
point of view of developing new media approaches to facilitate the flow
New Strategies of Knowledge
Translation: A Knowledge Value
Mapping Framework
JUAN D . ROGERS
342 Health Communication in the New Media Landscape
of information and knowledge. In this chapter, we will address them
from the point of view of the alternative representations of knowledge
that may be necessary given the various communities of creators and
users of health care knowledge and how they relate to each other.
Specifically, we will focus on the notion of knowledge translation
that has been suggested in various parts of the international health care
community. Our purpose is twofold. First, we will give an interpreta-
tion and assessment of the current discourse on knowledge translation.
Then, we will provide a basic framework for new strategies in knowledge
translation on the basis of our assessment. In this chapter, we will first
outline current discussions of knowledge translation. The second section
will identify the social groups and communities that must communicate.
The third section analyzes what we know about knowledge flow and how
its relation to the values of the communities previously identified affects
knowledge translation. The fourth section develops the notion of knowl-
edge value mapping for capturing specific configurations of knowledge
and value within which knowledge flows of interest could or do take
place. On this basis, a framework for developing knowledge translation
strategies is proposed.
KNOWLEDGE TRANSLATION AND THE DEFINITION OF
A COMMUNICATION AGENDA
There are several definitions of knowledge translation in the literature
and in health care policy documents. The Canadian Institutes of Health
Research’s definition of knowledge translation is one of the best known:
[Knowledge translation] is the iterative, timely and effective process of
integrating best evidence into the routine practices of patients, practi-
tioners, health care teams and systems in order to effect to optimal health-
care outcomes and to optimize health care and health care systems. (cited
in National Center for the Dissemination of Disability Research, 2005, p. 2)
The definition adopted by the National Institute for Disability and
Rehabilitation Research of the U.S. Department of Education is:
The collaborative and systematic review, assessment, identifi cation, aggre-
gation, and practical application of high-quality disability and rehabilitation
research by key stakeholders (i.e., consumers, researchers, practitioners,
and policymakers) for the purpose of improving lives of individuals with
Chapter 13 New Strategies of Knowledge Translation 343
disabilities. (National Center for the Dissemination of Disability Research,
2005, p. 2)
As our subject pertains to the process and conditions of the creation
of scientific knowledge and its fate in terms of validation, dissemina-
tion, use, and amplification in the larger societal context, it is critical to
identify the role these definitions play. There are two main possibilities.
First, the definitions could be indicating an entity, category, or property
pertaining to phenomena observed in the world. This is the typical use
of definitions in the research mode, and knowledge translation would
be either a label for an observed entity in the social world (such as an
organization, for instance) or a construct that serves to explain social
phenomena (such as social class, for example).
Alternatively, the definitions could be indicating an abstract entity or
set of conditions that does not exist but could come into existence if cer-
tain actions are taken. This is the typical use of definitions in the policy-
and decision-making realms. Clearly, these two definitions of knowledge
translation, with their similarities and differences, belong in the second
class. They are not labels used in the process of describing an observed
reality. Rather, they are labels used to define an agenda of action so that
a certain envisioned state of affairs becomes reality.
In other words, knowledge translation has not been “discovered” in
the process of research. It is part of a policy proposal to achieve certain
goals. It may be the case that in the process of arguing for this course of
action, certain actions taken by relevant groups are identified as a case of
knowledge translation, and their outcome noted as an example of what
is desired. Therefore, the argument would say, if more such actions are
taken under the conditions specified by the definition, more desirable
outcomes of the same sort should happen (Canadian Institutes of Health
Research, 2006).
The discussion that the definitions generate depends greatly on this
distinction. If they were part of the research process, then we would dis-
cuss whether the knowledge claims associated with the identification of
knowledge translation in the real world are valid based on the evidence
that was collected, whether that evidence is in fact what the researchers
say it is and how it relates to prior knowledge about related phenomena,
and so forth.
Since these definitions belong in the agenda-setting class, their
discussion has the format typical of deliberations on decision making,
which include the justification of goals, the selection of proper means
344 Health Communication in the New Media Landscape
toward their achievement, and the assessment of the feasibility and sus-
tainability of their implementation, among other things. In other words,
knowledge translation must be made to happen with policy instruments.
The outcomes should then be assessed in order to establish whether the
desired goals were realized (Choi, 2005; Grimshaw et al., 2004; Grim-
shaw, Santesso, Cumpston, Mayhew, & McGowan, 2006; Lavis, 2006;
Lavis, Robertson, Woodside, McLeod, & Abelson, 2003; National Insti-
tute for Disability and Rehabilitation Research, 2005; Nutley & Davies,
2000; Sudsawad, 2007; van Kammen, de Savigny, & Sewankambo, 2006;
Zwarenstein & Reeves, 2006). The two forms of discussion of knowledge
translation are related, since the proposed interventions in the world
must match up with what we know about the phenomena that the pro-
posals intend to control or affect. Still, each one has its specific purpose.
Point of Departure: A Gap
In general terms, the attention paid to knowledge translation comes in
response to a growing consensus that there is “a gap between what we
know and what we do” (Canadian Institutes of Health Research, 2004,
p. 2) in health care. The evidence for this gap comes from various fields
of clinical practice in which too much variation in the application of cer-
tain treatments occurs in spite of the existence of evidence recommend-
ing one approach over the others (Davis et al., 2003; Kerner, Rimer,
& Emmons, 2005b). However, there are several different underlying
reasons given for this gap in the literature. In some cases the gap has
to do with the large volume of knowledge being produced and the lim-
ited ability of users, including clinical practitioners, to absorb it (Choi,
2005; Graham, Logan, Harrison, Straus, Tetroe, Caswell, & Robinson,
2006). This is the information glut gap. Others see a gap between the
complexity of the knowledge produced and the ability of the users to
understand it completely and use it (Choi, 2003, 2005; Kerner, 2006).
This is the knowledge complexity gap. Still others see a gap between the
knowledge produced by research and the criteria used by policy makers
and administrators to make decisions. The reason for this gap has to do
with at least two factors, one related to the policy process, and the other
to the peculiarities of the research community. On one hand, the insti-
tutionalization of policy processes may include policy legacies, peculiar
time frames, and varying levels of authorization for consideration of pol-
icy priorities leading to difficulties in the timely application of research
knowledge in policy deliberations (Lavis, Ross, Hurley, Hohendadel,
Stoddart, Woodward, & Abelson, 2002). On the other hand, the specific
Chapter 13 New Strategies of Knowledge Translation 345
focus of research topics, often perceived to be removed from pressing
issues of practice and full of jargon in its mode of communication, is
difficult to align with the interests and mode of information acquisition
of policy makers (Choi, 2003). This is the “two-communities theory” of
knowledge utilization (Caplan, 1979, p. 459). For this reason, the policy-
making realm appears resistant to changes suggested by research find-
ings. So we have a relevance-criteria gap.
The detection of the symptoms of a gap between available knowledge
and current practice motivates the implementation of initiatives to rem-
edy the situation. Most of the evidence brought to bear on the proposals
has to do with the nature of these symptoms rather than the nature of
the underlying causes. An exception is the study by Lavis and colleagues
(2002) that explored the use of health services research knowledge in
health policy making in Canada. But in general, very little empirical and
analytical work has been directed at elucidating the underlying nature
of the perceived problem. Furthermore, even in this exceptional study,
the interpretation of results assumes that the nature of the problem of
applying research in various areas, such as clinical practice, policy mak-
ing, and consumer choice, is essentially the same for all fields of knowl-
edge. This particular study invoked Caplan’s two-communities theory
as background. But it failed to recognize that Caplan was articulating
the specific problem of the use of social science knowledge in policy
making, for which the relationship between research knowledge claims
about social actors and the policy focus is often direct. There is less
overlap between the medical knowledge about the clinical benefits of
treatments for disease, on one hand, and the knowledge of reasons and
circumstances under which social actors may or may not choose to use
them, on the other. Therefore, the knowledge flow problem identified
as a gap between available knowledge and current practice has not been
fully articulated, leading to a key assumption of knowledge translation
proposals, namely, that knowledge flow problems are essentially uniform
or invariant across diverse fields of knowledge and, therefore, indepen-
dent of knowledge content.
Intended Effects: Health Care Outcomes via
Behavior Modifi cation
The desired outcomes of the implementation of knowledge translation
are health benefits for the target population. These are expected to
occur as a result of utilization of the highest-quality research knowledge,
as determined by its grounding in evidence, and generally assumed to
346 Health Communication in the New Media Landscape
be already available. The gaps discussed above represent interruptions
or obstacles to this process. In all cases described in the literature, there
is a group or community of mediating stakeholders in the chain from
research to outcomes via utilization that has not aligned its practices with
the implications of the available certified knowledge. Knowledge trans-
lation strategies in the form of interventions aimed at behavior modi-
fication are suggested to remedy the situation (Canadian Institutes of
Health Research, 2004; Grimshaw et al., 2001).
Each one of the gaps mentioned earlier suggests a core strategy that
fits the problem. The remedy for an information glut, for example, is
to summarize the enormous volume of information in ways that main-
tain the integrity and validity of the original sources while significantly
reducing the volume. Users are then expected to use the information. A
knowledge complexity gap requires another type of simplification that
also preserves the ultimate validity of its substance but makes it better
suited to the knowledge absorption means at users’ disposal. Once again,
users are then expected to apply the knowledge provided in the simpli-
fied format. A relevance-criteria gap is similar to the other two in that a
reformulation of the content that is closer to the regular mode of knowl-
edge acquisition and use by the target groups is needed. In this case, the
new format must show how the original content is relevant to the user’s
agenda even though it didn’t appear so in its original formulation. In all
these versions of the gap, the new form of the same substantive content
naturally suggests the analogy of a translation. The original meaning of
the content must remain the same while it is expressed in the language
of the target group.
According to this view, once the content of the knowledge is put
in terms amenable to acquisition by intended users, it should have an
effect on them so that the implications of the knowledge can be real-
ized through the actions of users who adopt it. The ultimate measure
of the success of a knowledge translation strategy is not the reformu-
lated knowledge product in the form of a systematic review, a new set of
guidelines for medical decisions, or a redesigned continuing education
program, for example. Rather, it is the observable and measured change
in behavior by the user group of interest in line with what knowledge
producers believe are the implications of the knowledge they created.
Much of the literature on knowledge translation strategies and inter-
ventions uses the language of “behavior modification” very generally as
the desired result of the process (Choi, 2005; Davis et al., 2003; Grim-
shaw et al., 2001, 2004; International Development Research Center,
Chapter 13 New Strategies of Knowledge Translation 347
2005, Lavis, 2006; National Health Service, 1999). Except for the end
users, namely the patients or persons with disabilities who are the ulti-
mate beneficiaries of the application of health knowledge, whose level
of education and expertise is not a condition for receiving the benefits
of knowledge use, the other communities of users are highly educated
professionals and decision makers who have a degree of autonomy in
their work environment. Therefore, framing the measurable results of
knowledge translation as behavior modification begs for scrutiny, which
will be brought later in this chapter.
Knowledge Translation as a Communication Problem
This summary review of knowledge translation suffices to conclude that
at its core it is a communication problem. It is possible to view both
the gap diagnoses and the proposed remedies as communication failures
and new communication strategies, respectively. In all articulations of
the problem there is a need to convey meaningful content to a target
audience. As a matter of fact, the very notion of translation, taking some-
thing expressed in an original language and expressing it in another, is
one of the classical communication problems, one that has been studied
from multiple disciplinary perspectives for centuries (Gertzler, 2001).
This analogy with linguistic translation is obviously intentional in the
formulations of knowledge translation but is not meant to be adopted
as a complete theoretical model. The reasons for using this analogy are
important, though. Since knowledge translation definitions are agenda-
setting statements or normative definitions, there are aspects of linguis-
tic translation that illuminate its key priorities. Central among these is
the idea of taking substantive content formulated in the context of one
community using its own language and rephrasing it in terms of the
habitual communication patterns of another so that the original mean-
ing is preserved. In spite of the fact that the definitions expand on this
simple notion with statements describing the process as “iterative, timely
and effective” or “collaborative and systematic,” and with an established
goal such as “to effect optimal health care outcomes” or “improving the
lives of individuals,” ultimately the priority of preservation of meaning
is an explicit expectation of those who engage in knowledge translation.
They assume that when the reformulation of content with preserva-
tion of meaning (i.e., translation) works properly, the realization of the
potential impact will be observed in terms of those circumstances and
objectives. In other words, when the users are able to understand the
348 Health Communication in the New Media Landscape
meaning of the knowledge in question, after participating in the process
described in the clarifying statements, they will use it and its benefits
will be realized.
The conceptualization of problems related to the creation, dissemi-
nation, and use of knowledge as communication problems is standard
(Rogers, 1995). Many of the existing analyses of knowledge translation–
related issues are presented in terms of communication. The strategies
to address diagnosed problems are communications strategies (e.g.,
guideline formulation and dissemination, systematic reviews for specific
audiences, design of curricula for continuing education, use of media
strategies to make content in these efforts available). The assumptions of
the presentation of knowledge translation as a communication problem
need to be explored in detail.
COMMUNITIES OF PRODUCER-USERS IN
NEED OF TRANSLATION
The challenge of knowledge translation starts with the recognition that
there are at least two communities, producers and users, for whom the
core meaning of some knowledge content is relevant but who, for vari-
ous reasons, do not have the same material or cognitive means of access-
ing it. Devising alternative means of access has been one of the main
objects of attention for knowledge translation (Canadian Institutes of
Health Research, 2004, 2006; van Kamen et al., 2006). In doing so, the
diversity of uses of knowledge and of user contexts have been the first
phenomenological observations that knowledge translation analysts have
made (Jacobson, Butternill, & Goering, 2003; Landry, Lamari, & Amara,
2001, 2003; Lavis, 2006; van Kerkhoff & Szlezak, 2006).
Closer scrutiny of knowledge utilization reveals that the original
intuitive formulation of two sides, producers and users, with two distinc-
tive and mutually exclusive roles to play in the dynamics of knowledge is
too simplistic to be of any analytical value. In most contemporary condi-
tions, knowledge is created or produced in complex networks of teams
of researchers affiliated with various sorts of organizations, such as uni-
versities, industry laboratories, and government institutes (Zwarenstein
& Reeves, 2006). They interact in varying degrees with decision makers,
some having oversight responsibilities within their own organizations and
others related to funding agencies and policy institutions that affect their
work. There are also growing interactions with business persons, with
Chapter 13 New Strategies of Knowledge Translation 349
clinicians and practitioners in the case of health research, and often with
end users, patients, or advocates for people who have some stake in what
researchers work on. The strategic design for knowledge translation in
the Canadian public health system actually aims at increasing these sorts
of interactions (Canadian Institutes of Health Research, 2004).
All the individuals, groups, and organizations not doing research
work we mentioned above are potential users of research in some form
(Sudsawad, 2007). To these we might add other sets of people who may
not interact directly with researchers or the entities they work in but
may pick up knowledge they create from publications or press releases.
Two important points must be made about this situation. First, the
content of knowledge as it moves through the link between any two
nodes may change in important ways. For example, researchers con-
stantly consider their understanding of priorities and needs of decision
makers and users’ experiences in the reformulation of their research
work. So there are multiple paths for knowledge to flow toward the cre-
ators that impinge on the very content of their research. Second, the
outcome of this complex network of interactions in a particular field is a
pattern of knowledge flow that can follow any path through the links in
the network. The content and meaning of knowledge is not completely
determined by those who hold the label of creators or producers. As a
matter of fact, the actual attributions of meaning of the knowledge that
flows between any two points in the network, either in direct contact
with each other or indirectly connected through another producer-user,
cannot be assumed to remain constant. The actual meaning attributions
at each point must be determined empirically. In sum, the two roles of
producer and user of knowledge are not clear cut and mutually exclu-
sive. In every instance of use there is a degree of transformation of the
knowledge, unless the use is limited to a verbatim repetition of a lin-
guistic formulation without further impact (Bozeman & Rogers, 2002;
Rogers & Bozeman, 2001).
The multiplicity of paths of knowledge flow in the process of knowl-
edge creation and use has been widely recognized and built into mod-
els of the process of innovation (Forrest, 1991; Kline & Rosenberg,
1986). More importantly, though, from the point of view of knowledge
translation, what is not often recognized analytically is that creation and
use are intertwined and that most instances of use are actually use and
transformation. Furthermore, the specifics of how meaning is created in
the process of use and transformation for each set of users is crucial for
understanding the flow of knowledge (Bozeman & Rogers, 2001).
350 Health Communication in the New Media Landscape
There are numerous common examples of these phenomena to
illustrate the point. We often think of uses of science as the application
of research results to problem solving. This is the case, for example,
when research on disability provides the foundation for developing
assistive technologies to enhance the quality of life of persons who
are affected by those disabilities. A slightly different and highly public
instance of the use of scientific knowledge occurs in the case of envi-
ronmental science. Research results are used to attribute responsibili-
ties for its preservation and design regulations with legal force either
to prevent more damage or to reverse some of the changes. These are
not, strictly speaking, problem-solving applications. Moving still further
away from the first case scenario, we can see a reverse flow in the case
of the development of drugs to treat certain diseases that may draw on
the experience of patients who suffer side effects to do research on new
ones that do not produce side effects. A fourth example comes from
the use of theories in one field to inspire the study of completely dif-
ferent phenomena in another field. A case in point is the application of
evolutionary theory from biology to economic phenomena to develop
evolutionary economics (Nelson & Winter, 1982). In the process of
technological innovation, this transformation of knowledge as it is used
is also recognized (Savory, 2006).
These four examples actually involve different patterns of knowledge
flow through different sorts of networks of people and organizations. But
what they all have in common is that at the point where research knowl-
edge is used, a specific sort of knowledge creation must happen for the
application to go forward. First, the general results from research that
are brought to bear on the point of use must be matched to the prob-
lems. So the results must be interpreted and the problems articulated so
that they are embedded in a common meaning frame. Second, in most
realistic situations the problems are not trivial; thus misalignments and
difficulties arise. Solutions to these new problems must be developed or
called for.
A key component of the original translation analogy is undermined
by these findings. The content to be translated is no longer completely
predefined and stable or under the control of one set of participants in
this process. It is no longer just a matter of putting one linguistic for-
mulation of research results into another linguistic formulation that is
accessible to a target audience. It is necessary to understand how the
reformulations of knowledge that occur at every node of interest in the
network take shape. In the debate over evidence-based medicine, a key
Chapter 13 New Strategies of Knowledge Translation 351
element of the articulation of knowledge translation in the literature
(Estabrooks, Thompson, Lovely, & Hofmeyer, 2006), this shifting of the
meaning of knowledge content at different points of the producer-user
network has been noted. Buetow (2002) suggests that a “medicine of
meaning” must inform the framework for establishing fruitful relations
for production and use of health knowledge. A key aspect of this frame-
work is the inclusion of relevant users in the definition of what counts as
evidence in evidence-based medicine because otherwise the very prac-
tice of medicine loses much of its meaning.
Any useful understanding of knowledge translation must account for
these processes and the phenomena that are associated with them. This
leads us to a triple agenda for the development of knowledge translation
approaches. In the first place, we have a phenomenological dimension,
which must address all the empirical aspects of knowledge flow processes
relevant to knowledge translation. This section has begun to anticipate
what is involved by describing the network of relations and diversity of
producer-user roles that any such process necessarily involves.
Second, we have a policy dimension that stems from the norma-
tive point of departure for knowledge translation given in its defini-
tions. There are goals in specific fields of knowledge, such as health
care systems or disability and rehabilitation research, that must be real-
ized. From the definitions of knowledge translation we have “to effect
optimal health care outcomes and to optimize health care and health
care systems,” and “the purpose of improving lives of individuals with
disabilities.” Therefore, our investigation of knowledge flows and their
consequences will be guided by the question of which processes lead to
outcomes aligned with these goals.
Finally, we have a communication dimension, given by the nature
of the knowledge flow processes that the goals of knowledge transla-
tion define. Most of the challenges are essentially about the creation of
meaning in the context of social relations, which lies squarely in con-
temporary understandings of communication phenomena (Fiske, 1990).
Furthermore they arise in the context of new communication phenom-
ena, and many of the actions to be taken will have significant commu-
nication elements. These are communication challenges created in part
by the emergence of a new media landscape that demands analysis and
approaches suited to these new realities. The challenges of knowledge
translation do not represent a typical “old” problem that can now be
solved with “new” media. Rather, they are problems created by a new
set of circumstances in the status of science and its role in contemporary
352 Health Communication in the New Media Landscape
society, which require new understanding in order to inform appropriate
strategies in the new knowledge society.
CONTENT AND VALUE IN KNOWLEDGE FLOWS
Observed Content–Value Interaction in
Knowledge Utilization
The next step is to explore the knowledge flows under the purview of
knowledge translation in order to understand how they occur and what
factors impinge on the use-and-transformation instances of relevant
producer-users. There are several implications from the discussion so
far that can be summarized as follows:
Users of knowledge are likely to be different from each other.
Most users of knowledge are also creators of knowledge, and vice
versa.
There are multiple paths of knowledge fl ow with no a priori
priority.
Interacting groups of producer-users are likely to have different
modes of internal communication.
Interacting groups of producer-users are likely to have different
criteria to assess validity and utility of knowledge.
The interactions of researchers and policy makers in the health care
field, one of the three perceived gaps that motivate knowledge transla-
tion, have been studied by knowledge translation researchers (Amara,
Ouimet, & Landry, 2004; Lavis, 2006; Lavis, Posada, Haines, & Osei,
2004). They observe that health research knowledge as it comes from
clinical research is not sufficient for developing health policies. For ex-
ample, policy makers often need cost-benefit analyses of implementa-
tion proposals and comparisons of their potential impact with competing
or existing policies and regulations, which clinical research results do
not include and, furthermore, clinical researchers are ill equipped to do
(Grimshaw et al., 2004). This example points us in an important direc-
tion, namely, that the priorities and values of a specific producer-user
community creates specific demands on the shape of the knowledge
content at stake. As a result, knowledge will be adapted, extended, or
refined or will undergo other sorts of transformations in the very act of
■
■
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■
■
Chapter 13 New Strategies of Knowledge Translation 353
its use. Alternatively, if the transformation process does not occur under
current circumstances, the knowledge flow will be impeded and it will
not be used.
Amara and associates (2004) studied several types of knowledge use
by policy makers in government agencies and point out that in order to
increase knowledge use of all types and in all policy areas, the users had
to interact more with the researchers and provide them with additional
incentives and guidelines for adapting their work to the needs of policy
and public management. In other words, it is knowledge flow in the
reverse path that is needed in order to increase the utilization down
the primary path. These conclusions implicitly recognize the production
role of the users.
Welch and Dawson (2006) studied the implementation of evidence-
based practice in the field of occupational therapy. Practitioners in this
field are embedded in a hierarchy of health care organizations and gov-
ernment health agencies. Health policies in the United Kingdom, where
the study was conducted, demand that the implementation of evidence-
based practice be demonstrated throughout occupational therapy prac-
tice under the National Health Service. Their study reveals that most
of the onus of practice change is put on individual occupational therapy
practitioners without significant organizational support. They detect
numerous obstacles to the success of this process, including perceived
labor unfairness, misalignment of the evidence-based practice materials
with their form of knowledge acquisition and application in the field,
lack of ownership of the content of evidence-based practice presented
to them, and a lack of structures of mutual support for engaging in learn-
ing new practice guidelines. A very significant constellation of values
underlying the conclusions drawn by this study is at stake. There are
labor and professional values related to distribution of effort, relations
with colleagues, and the assessment of demands within their work and
professional hierarchy. There are also epistemic values at stake related
to the selection and application of knowledge content in their field of
practice.
Studies of knowledge use, especially those directed at sponsors or
managers of research who are evaluators of the process rather than the
direct producers or users under their responsibility in the field, clearly
state that goals or objectives of the use of knowledge must be estab-
lished first so that the outcomes of knowledge utilization can be assessed
(Conner, 1980). The analytical process of assessing utilization involves
paying close attention to the priorities and modes of communication of
354 Health Communication in the New Media Landscape
the target users to detect the factors that facilitate or hinder the use of
the knowledge in question. In the words of a group of researchers work-
ing on the application of research to rehabilitation practice, bringing
research to clinical practice always “requires a learning framework that
focuses on the intended users of research as the most critical element of
the process” (Farkas, Jette, Tennstedt, Haley, & Quinn, 2003, p. 48).
In a recent review of knowledge translation, Sudsawad (2007) found
that numerous approaches and measures have been developed in dif-
ferent fields of knowledge to conceptualize and measure its use. The
very diversity of possibilities seems to be the most striking lesson drawn
from that exercise. If we set it against the background of the variety of
communities of producer-users that are relevant in most important cases
of knowledge flow, that result is not so surprising. Among other things,
most approaches to knowledge utilization assume, often unwittingly, an
inadequate model of communication. They use the “process model” of
communication that originated with the study of technical communica-
tion problems (Fiske, 1990). The knowledge to be utilized is analogous
to the message exchanged between a sender and a receiver through a
channel of communication that links them. Most of these studies at-
tempt to measure whether the “message,” namely, the knowledge con-
tent of interest, has actually been received by the intended receiver. The
examples of empirical research we have reviewed so far indicate that the
stability of the roles of producer and user, analogous to the sender and
receiver in this model, cannot be assumed. Therefore, in approaching
knowledge translation as a problem of understanding and participating
in knowledge flows in complex social networks, it is necessary to adopt
a communication model that allows for the creation of meaning in the
communication process (Fiske, 1990). For this, it is necessary to di-
rectly account for the content–value combinations that are present in
the knowledge flows of interest.
The definitions of knowledge translation that identify normatively
the problems of interest point to the complexity and interactivity that
should be expected in the process. However, by retaining control over
all the details of knowledge content and passing down in the form of
evidence-based medicine or evidence-based practice a predetermined
fixed set of meanings, they do not recognize, in a full analytical sense,
the set of social and communication phenomena within which knowl-
edge translation processes are embedded. As a result, the development
of strategies for achieving the desired outcomes becomes a fragmented
Chapter 13 New Strategies of Knowledge Translation 355
and frustrating exercise of fitting abstract procedures in realms that
seem either unprepared or indifferent or hostile to their implementa-
tion (Ball, Wadley, & Roenker, 2003).
In sum, knowledge translation processes do not merely involve the
two languages of the producer and the user. Nor do they refer simply
to a single field of knowledge content. There are as many translation
challenges as there are distinct content–value interactions affecting the
knowledge flow.
Articulation of Content–Value Combinations in
Different Contexts
The knowledge translation agenda includes the objective of implement-
ing evidence-based medicine and evidence-based practice (Davis et al.,
2003; Estabrooks et al., 2006; Lavis, 2006; Zwarenstein & Reeves, 2006).
Therefore, a brief consideration of the sources and nature of evidence
in the process of knowledge creation and validation is in order and made
necessary by the assertion in the previous sections that the meaning of
knowledge content in most knowledge flows of interest is not completely
predetermined and stable.
A fairly standard view in the philosophy of science today is that evi-
dence acquires meaning in relation to some theory for which it is evi-
dence. Furthermore, what is discussed today is not whether evidence
can stand alone but rather to what extent data gathered with the purpose
of assessing a theory is sufficient to confirm it or disconfirm it, or provide
the basis for a definitive choice between rival theories (Dawid, 2006;
Mayo, 1996; Quine, 1970). Therefore, theories are logically prior to evi-
dence, since they provide the criteria for relevance in selecting data to
support the theory by confirming a prediction, for example. Evidence is,
furthermore, expressed in the language provided by the theory, using its
definitions and constructs to communicate what has been observed as
the result of an experiment. The theories under consideration and oth-
ers used to set up experiments and tests contain the articulation of con-
ventions that guide the practice of science with approved procedures.
All these constitute a set of epistemic values associated with that field of
knowledge. In other words, there is a deep intertwining of content and
values in the very production of scientific knowledge that enables the set
of scientists working in the field to become a community of knowledge
(Douglas, 2000; Lacey, 2005).
356 Health Communication in the New Media Landscape
The details of this interrelation of content and values in scientific
knowledge vary in subtle ways from field to field and also from time to
time within a field when important shifts in the direction of research
occur. A fascinating example of this comes from the field of mental health
research. Work by Anthony, Rogers, and Farkas (2003) represents a vig-
orous effort to respond to the call for rigor from evidence-based medicine
with a keen awareness of better-informed theory for assessing the rele-
vance and validity of evidence. They show how a fundamental theoretical
shift in mental health research, labeled the “recovery vision,” has radical
consequences for what counts as evidence in an evidence-based medi-
cine approach to research and clinical practice. According to Anthony
and associates, fundamental treatment outcome variables used in the
evidence-based medicine approach (e.g., variations in hospital relapse or
recidivism, inpatient hospitalization, length of stay, symptoms) become
relatively unimportant compared to others that have to do with patients’
experiences and goals as indicators of recovery. The development of the
new theoretical perspective requires a commitment to develop evidence
to explore its implications either to support and improve it or to discard
it for better ones. The very content of evidence-based medicine will be
different depending on the path researchers decide to follow in their
theoretical commitment.
The criteria that guide evidence assessment for relevance and qual-
ity are also expected to differ from one field to another. It has been noted
that evidence-based medicine has its origin in two particular subfields
of clinical medicine—namely, general internal medicine and clinical
epidemiology—and that transferring evidence assessment criteria from
them to other fields of medicine creates problems (Upshur, VanDen-
Kerkhof, & Goel, 2001). In particular, from those fields, evidence-based
medicine brings along the emphasis on quantitative measurement and,
especially, randomly controlled trials (Worrall, 2002). In fields outside
those in which it originated, these aspects of measurement and evidence
gathering may not be feasible or as important. Upshur (2001) calls for an
inclusive model of evidence in health care to “integrate the epistemolo-
gies found in the various disciplines involved in health care” (p. 95). This
perspective recognizes that knowledge translation will necessarily be an
interdisciplinary endeavor because of the diversity in the communities
of knowledge producer-users that make up the delivery of health care.
Therefore, the array of epistemic and contextual values that are integral
to each must be taken into account for the dynamics of knowledge flow
to be assessed.
Chapter 13 New Strategies of Knowledge Translation 357
Since the application or utilization of knowledge is not a simple, pas-
sive process of adopting an instrument and following instructions, so to
speak, getting involved with new knowledge requires a significant invest-
ment of capabilities and resources. In the industrial innovation literature
this is widely recognized, and the concept of absorption capacity has
been introduced to explain the nature of these efforts to enable the use
of external knowledge. Many industrial firms have their own research
capabilities, often with the principal objective of being able to absorb
external knowledge rather than create their own from scratch (Cohen &
Levinthal, 1990).
Scientific publications are not easily understood by untrained per-
sons. The more specialized and novel the content of the research results,
the more distant it is expected to be from non-specialists’ experience
and capabilities. Therefore, there must be an expectation of significant
payoff for the commitment of resources to be made. In other words, sci-
entific research will be applied if it is perceived to add value to the user
(Landry, Amara, Pablos-Mendes, Shademani, & Gold, 2006). There
are several kinds of value: a commercial opportunity, enhanced profes-
sional capability, and realization of a social priority, among other things.
However, everybody expected to make an investment in the absorption
process must perceive the possibility for added value. This may be a
challenge in hierarchical systems, such as the health care system, in
which the added value is perceived by decision makers, but the bur-
den of absorption is borne by a group of subordinates. A study of the
values grounding the professional identity of nurses showed that the
actualization of other-oriented values is integral to their provision of
nursing care as professionals and that they realize self-oriented values,
such as the satisfaction and reward in their work, through the realiza-
tion of the other-oriented values (Fagermoen, 1997). However, contex-
tual factors stemming from the organizational and administrative levels
may be limiting their ability to provide care and increasing their sense
of strain, making their work less meaningful. Change in the broader
context of work seems to be what should occur, according to McGuire
(1990) and Rushmer and associates (2004). McGuire protests the impli-
cation that the outcome of evidence-based practice as behavior modifi-
cation means that the use of experience and craft knowledge in nursing
is irrational. Change should be expected at another level in order for
nursing practices to change rather than building from the individual up.
It is not surprising to read in the conclusions of knowledge translation
intervention studies that what the ones that actually work best all have
358 Health Communication in the New Media Landscape
in common is that the interests and values of the users have been taken
into account!
The clinical practices of doctors is another area that has received
much attention as a critical case for assessing various knowledge transla-
tion interventions or knowledge utilization strategies because the lack of
consistency across the medical field in diagnosis and treatment of several
common conditions is one of the main gaps motivating evidence-based
medicine and knowledge translation (Hader, White, Lewis, Foreman,
McDonald, & Thompson, 2007). A strategy used to address this issue
has been the implementation of clinical practice guidelines stemming
from evidence-based medicine. The overall results of this strategy have
been lackluster. In a recent study of factors leading to changes in doctors’
clinical practices, Hader and associates found that decisions to adopt
clinical practices are made in complex networks of consultation and col-
laboration with colleagues. But the evidence-based medicine guidelines
are expected to be followed independently of those networks; thus these
guidelines expect the judgment of unknown experts to be trusted. The
guidelines acquire meaning for the doctors within the entire network of
relations and exchanges that grounds their professional decisions and
actions. So they not only provided information but also created ques-
tions about their ability to make critical medical decisions and were not
sufficient to enable the doctors to produce new medical knowledge in
the context of their use.
Knowledge translation processes occur at the boundaries between
communities that have different cognitive styles and value frames, even
though they may be focused on common areas of social experience (Fal-
lis, 2006). There are many such boundaries since there is no simple
duality of producers and users to mediate between. Rather, there are dif-
ferences among fields of research as well as among various categories of
practitioners, service providers, assistive technology firms, policy mak-
ers, and administrators, to name some of the obvious groups. These all
interact and participate in health knowledge flows and fulfill producer-
user roles that create the meaning of health knowledge content at each
point in social space and time. Insofar as shared goals of improved health
care outcomes are being realized in the process, knowledge translation
processes are being successful. However, it is clear that no simple inter-
vention on the basis of fixed knowledge content and the expectation of
behavior modification at one point of this system can be expected to
ensure success.
Chapter 13 New Strategies of Knowledge Translation 359
KNOWLEDGE VALUE MAPPING: A FRAMEWORK OF
KNOWLEDGE TRANSLATION STRATEGY DESIGN
Empirically Based Knowledge Translation: A Knowledge
Value Map
The diversity of values of interacting groups of producer-users is often
subsumed under the notion of stakeholders (Canadian Institutes of
Health Research, 2005; Fixsen, Naoom, Blasé, Frieman, & Wallace,
2005). It is understood that in a collaborative environment or in a ne-
gotiated process, the interests of stakeholders have an influence on the
choices, decisions, and, ultimately, outcomes. Rarely, though, is the spe-
cific set of priorities of stakeholders included in the analytic framework
for analyzing knowledge production and use dynamics and their effect
on the outcome.
The preceding analysis shows that in order to increase the chances
that a knowledge translation implementation will work and that increased
knowledge flows will happen up and down the paths linking various
communities of producer-users, interventions require detailed under-
standings of the content–value maps of the network. Since the focus of
attention of a knowledge translation initiative could be narrow or broad
in its intended reach, strategies might vary in the complexity of con-
tent–value combinations they must address. In narrowly focused cases,
the size of the communities is small, so there is a high degree of familiar-
ity through a long history of interactions, leading to shared communica-
tion patterns and a good understanding of each other’s values and goals.
Knowledge translation strategies may involve a simple reformulation of
knowledge content into media and formats that suit applications and
activities that all concerned know quite well ahead of time.
The experience with evidence-based medicine, evidence-based
practice, and knowledge translation in the last 20 years reflected in stud-
ies and evaluations shows that most cases of interest are not so simple.
Even in the case of doctors, who are said to be responsible for one of
the main gaps in knowledge use due to inconsistencies detected in their
clinical practices, initial knowledge translation efforts have been unsuc-
cessful, and the main reason given is that the patterns of knowledge flow
in which they are embedded are much more complicated than was origi-
nally supposed and those efforts have not provided adequate combina-
tions of content and value for them to change their practices.
360 Health Communication in the New Media Landscape
The emphasis on the evidence base for devising guidelines and other
normative components in knowledge translation approaches is, ironi-
cally, not matched by a similar emphasis on a fully empirical approach to
the social phenomena of knowledge flows. The empirical investigation
is generally confined to the measurement of outcome variables related
to the desired changes in behavior (Sudsawad, 2007). Part of the prob-
lem stems from the fact that knowledge translation has been defined
normatively first and, as such, is not the natural knowledge frontier of
any particular field of research. Efforts to systematize relevant knowl-
edge about knowledge translation have shown that there are numerous
social science theories that are relevant to a greater or lesser degree
(Estabrooks et al., 2006; Graham et al., 2006). Research in education,
diffusion of innovations, organizational behavior, psychology, social com-
munication, management, and political science, among other fields, all
have potential contributions. Some authors have attempted a reduction
to first principles or a small set of dimensions, virtually creating a new
social science field of knowledge translation research. This kind of work
may produce useful results but, at least for the time being, will inevita-
bly be subsidiary to the main research in the existing fields. The knowl-
edge translation research questions are not naturally emerging problems
from established research streams in the social sciences. Rather, they are
social science questions derived from a policy agenda in medicine mostly
investigated by researchers trained in the life sciences trying to adapt
social science work to their new needs. Not surprisingly, there is much
confusion around its development (Straus & Mazmanian, 2006).
An alternative strategy is to begin with a more complete descrip-
tion of the knowledge flows that are the object of knowledge translation.
Since the application of a reduced number of categories of knowledge
action to explain and predict knowledge utilization has not been very
successful, it may be more fruitful to attempt an explicit enumeration
of relevant entities involved in the knowledge flow for each knowledge
translation problem or field of interest. To use an analogy from math-
ematical modeling, rather than a closed functional form representation
of the relations under investigation, an explicit enumeration of instances
of the relation may be needed. Ebener, Khan, Shademani, Compernolle,
Beltran, Lansang, and Lippman (2006) used a similar device derived
from the knowledge management literature in a developing country to
assess the availability of health knowledge in the local context. In this
case, the map only accounted for knowledge content without establish-
ing content–value relations.
Chapter 13 New Strategies of Knowledge Translation 361
This description of the knowledge flow would be a knowledge value
mapping of the field that the knowledge translation agenda is focused on.
As a matter of fact, for the areas in which most of the knowledge transla-
tion initiatives have been implemented and evaluated, such as clinical
practices of doctors in Canada (Hader et al., 2007) and the studies of
evidence-based practice in nursing in the United Kingdom (McGuire,
1990), the elements of such a map already exist scattered in the publi-
cations and reports containing that work. A knowledge value mapping
approach would aggregate the information on content–value structures
from all those studies rather than attempt to condense all that work into
a few conceptual categories.
The map describes the relations of all the knowledge producer-
users linked to the knowledge flow in a specific field of interest. The
relations of interest are only those that have to do with participation
in the knowledge flow. These relations of production and use may be
indicated by citation in publication, participation in training, request
for information, and licensing agreements, among numerous other pos-
sibilities. Since the knowledge translation agenda already has an area
of knowledge application in view, it will always suggest an initial set of
producer-users. Through the use of documentation, surveys, interviews,
membership lists, and other materials, it is possible to identify a popu-
lation of producer-users of interest in a particular field of interest to
knowledge translation.
The next step involves studying the specific features of content–
value relations of the population that has been identified. Various types
of content–value relations will be associated to roles and groups involved
in practices. Therefore, it is expected that the number of distinct con-
tent–value structures actually detected in the population will be much
smaller than the number of individuals. This information will constitute
the knowledge value map of the field in question.
Application of the Knowledge Value Map to
Determine the Gaps
The three general types of gaps identified in the knowledge transla-
tion literature must be closed or bridged with interventions that bring
evidence-based medicine or evidence-based practice as the solution.
The more detailed investigations of the gap have been directed at doc-
tors’ clinical practices and nursing in the context of health service orga-
nizations. Some work has also been done on general conditions under
362 Health Communication in the New Media Landscape
which policy makers use scientific knowledge in their deliberations and
decisions. However, the potential for content–value structures to affect
knowledge flow is much greater. Furthermore, the actual problems may
not be in the place where the symptom seems most obvious (for ex-
ample, the impact of organizational leadership on individual practices of
occupational therapy; see, e.g., Welch & Dawson, 2006).
The first immediate analytical application of the knowledge value
map is to determine empirically all the points in the map where content-
value structures seem to be misaligned or maladapted for the desired
knowledge translation outcomes. These are all potential gaps. On the
positive side, the map also serves to document the evolution of facilitat-
ing content–value structures, which may serve for analytical purposes
to make generalizations about them. Most of the cases of knowledge
translation interest today are in fields other than those that originated
its development. Since the different fields of research and correspond-
ing professional practice will have different content–value structures,
the nature of the gaps is potentially different too. In these cases, the
construction of a knowledge value map is probably more important and
useful, because having had less attention paid to its knowledge flow, the
field does not have a set of categories of its own for articulating the main
knowledge translation challenges and is in danger of distorting the prob-
lems by importing them from the other areas.
For example, Pillemer and associates (2003) studied interventions in
the field of social gerontology. In spite of general agreement in the field
that theory and basic research findings should be well integrated in the
interventions, they maintain that actual connections are often weak or
absent. Interventions to support caregivers of elderly family members
had badly misunderstood their role, and a close investigation of the mis-
match between the nature of the need and the design of previous inter-
ventions led to the use of social psychology theories for new designs. The
content–value structure of the caregiver role had not been investigated
properly, so available research on care of the elderly was not brought to
bear on the interventions.
The example of the change in prevalent theory in the field of men-
tal health is also applicable here. The work of Farkas, Gagne, Anthony,
and Chamberlain (2005) points out the need for articulating the value
frame of patients in order for evidence-based practice to be imple-
mented. Interestingly, this work presents the challenge of developing
services that take into account the values of patients with severe mental
illness. Before a recovery vision of mental health problems was devel-
Chapter 13 New Strategies of Knowledge Translation 363
oped, patients were thought not to be able to have coherent values or
priorities. Farkas and associates argue that consideration of those values
has an effect on the agenda and approaches of research in mental health,
the managerial tasks of administrators of mental health services, and the
ability of advocates and consumers to assess how well available services
fit their needs.
In sum, the nature of the gap detected from analytical application of
knowledge value mapping will guide the selection of appropriate inter-
vention strategies that take advantage of the facilitating features of the
knowledge value structure of the field revealed in the map.
Refl exive Statement of the Knowledge Translation
Agenda: The Portfolio Level
Since each type of content–value structure will require different knowl-
edge translation strategies, it may seem natural to conclude that research-
ers in each field are their natural implementers. As a matter of fact, since
most of the literature on knowledge translation assumes that the results
of research keep their meaning and implications intact as they flow to the
utilization context, extending their responsibility to ensure the usability of
their results seems to be a logical conclusion. However, the perspective
developed in this chapter argues against it. Researchers are not in control
of the transformations that their research results undergo as they flow to
other communities of producer-users. Furthermore, their research spe-
cialty is almost certainly quite different from what is required to under-
stand the details of contextual phenomena that take place as knowledge
flows through the other communities. Charging them with the responsi-
bility of analyzing knowledge translation phenomena and implementing
strategies to achieve its goals creates another case of content–value mis-
alignment that doesn’t favor knowledge flow.
Actually, the need for knowledge translation is generally perceived
by decision makers who have responsibilities over several teams of
researchers in multidisciplinary fields who actually or potentially inter-
act with or affect a large number of complex constituencies (involv-
ing, among others, practitioners, health organizations, policy makers
in other agencies, industry in assistive technology or pharmaceutical
fields, patients and their families, and advocacy groups). In such a sit-
uation, a knowledge translation strategy based on the efforts of indi-
vidual researchers would probably not have much impact, nor would
it contribute significantly to desired outcomes, and it would result in
364 Health Communication in the New Media Landscape
frustration and wasted resources for those called to implement knowl-
edge translation programs. The reasons are clear by now. In a complex
system such as this, which is typical of many research funding or health
service agencies in the United States and other industrialized nations,
the assumptions of immutability of the meaning of knowledge content
and of the alignment of values and priorities of interacting producer-
user communities break down completely. The demands of knowledge
translation are too great for single teams without the interdisciplinary
experience with social sciences, and it is even suggested that it is too
big a problem for a single agency to tackle on its own (Kerner et al.,
2005a).
At this level, it seems invaluable to develop knowledge value maps
in all the areas covered by the portfolio in order to diagnose the gaps and
understand their nature. This should be an ongoing endeavor carried out
by interdisciplinary teams with experience in studying the social dynamics
of knowledge. From the results available at any stage, work can be com-
missioned to address the gaps and aim to ensure that the best research
knowledge flows to the relevant communities of producer-users. 1
Sustainability of Knowledge Translation Strategies for
Realization of Desired Outcomes
The most common statement of measurable effects of knowledge trans-
lation interventions is behavior change or changed practices of health
care providers, be they doctors, nurses, or other practitioners (Davis
et al., 2003; Grimshaw et al., 2001; Lavis, 2006; National Health Service,
1999). Some studies have indicated that the observed behavior change
of individuals may not be sustained in time if further conditions that
are not part of the original intervention are not in place (Plastow, 2006;
Welch & Dawson, 2006). These observations call into question whether
the ultimate outcomes of knowledge translation can rest on the mea-
sured behavior change of one individual practitioner at a time. Welch
and Dawson insist that the context of work set by the organization within
which nurses, occupational therapists, and other practitioners provide
care is highly determinant of their sustained practices.
Knowledge value mapping should be used to determine which
producer-user roles are in a position to ensure the long-term sustain-
ability of desired practices. It may require a rethinking of the roles
that practitioners perform in their organizations. The new knowledge
may demand such a content–value structure that not only will assumed
Chapter 13 New Strategies of Knowledge Translation 365
patterns of work no longer be adequate in their clinical aspects as the
research findings may indicate, but also other relational and hierarchical
patterns may be challenged.
As some of the authors we have cited have already indicated, the
level of change at stake is, more often than not, organizational, not indi-
vidual. In the business world this challenge has been confronted for a
long time now, and a large body of literature on organizational change
and its management exists (Weick & Quinn, 1999). Change of prac-
tices at the individual level usually follows, but it is not assumed that the
aggregate level is a simple outcome of individual behavior changes one
by one. Organizational structures are known to have significant effects
on the patterns of knowledge flow (Carlile, 2004; Gopalakrishnan &
Santoro, 2004).
Since the changes in practice that knowledge translation interven-
tions aim for are based on the acquisition and appropriation of knowl-
edge, the very notion of behavior change as a result seems inappropriate.
It suggests a necessitated or logical response to instructions rather than
the reasoned decisions of an empowered knower. It is not surprising that
evaluations of evidence-based medicine interventions have often been
caught off guard when the target practitioners challenged the content
of the knowledge and expressed disagreement with its claims (Hader
et al., 2007). The knowledge value mapping framework proposed here
recognizes the active engagement of the targets of knowledge transla-
tion interventions, who play producer-user roles rather than mere user
ones. In knowledge processes, this is akin to expressing “informed con-
sent” regarding risk, for example. In the context of risk communication,
policies aiming at behavior modification to reduce risk exposure have
also been proposed. The point has been forcefully argued that seeking
informed consent is the appropriate policy to recognize people as moral
agents and contribute to a more sustainable outcome in response to risk
(Bostrom, 2003).
CONCLUDING REMARKS: DO WE NEED A NEW
INSTITUTIONALIZATION OF THE HEALTH CARE
PROFESSIONS?
This chapter presented an analysis of knowledge translation and its im-
plications from the point of view of the social dynamics of knowledge
flows and proposed a framework to empirically establish the specific
366 Health Communication in the New Media Landscape
knowledge translation issues in a field of knowledge. The argument and
the framework are based on the recognition that there is a deep inter-
twining between the attribution of meaning to knowledge content and
an array of values of all participants in the knowledge flow. As a result,
there are no clear-cut producers or users of knowledge. Rather, there
are many communities of producer-users who use and transform knowl-
edge at every stage. Therefore, knowledge translation problems cannot
be studied with abstract categories that apply equally to all fields. The
content–value structure for each member or community of participants
in the field must be determined, and the nature of a potential gap or
other challenges to the desired outcomes of knowledge translation es-
tablished empirically. For that, a knowledge value mapping approach is
suggested.
The widespread sense that there is a gap between knowledge pro-
duced in research and the practices that could be informed by this
knowledge in almost every field of health care raises a deeper and more
general question about the overall institutional arrangement on which
health care is generally based. After several decades of efforts dedicated
to these issues with dissemination and utilization programs, evidence-
based medicine and evidence-based practice, knowledge translation, and
other such initiatives, we should not conclude that all these approaches
have failed. Rather, the situation seems to be that many different things
could work under different circumstances, but each time, success is met
with radical questioning by practitioners regarding what the changes
mean for their roles as health care providers and whether what they
do has the same meaning (Hader et al., 2007; Hancock & Easen, 2004;
Welch & Dawson, 2006).
Taking a cue from studies of the patterns of everyday life and emer-
gence of structure in social systems (Bourdieu, 1977; de Certeau, 1988;
Giddens, 1986), we know that most common social practices are embed-
ded in routines. These routines become the informal structures on which
everyday social life rests. Many professional practices are acquired by
intense training that allows for the routine application of complex skills.
Furthermore, the model of explicit, conscious, rational decision making
at every step is so much more prone to error and demanding of ener-
gy that these routines are essential to both high performance and effi-
ciency. Social roles are assumed and embodied in the context of such
routine social activities (Bourdieu, 1977). These facts of social existence
go a long way in explaining why change is very difficult and that constant
change is probably so disruptive and stressful that it cannot be sustained
in human society.
Chapter 13 New Strategies of Knowledge Translation 367
From the evidence gathered in the knowledge translation–related
studies, it seems plausible to hypothesize that the dynamics of knowl-
edge creation and flow in the contemporary knowledge society are put-
ting the established institutional arrangements under stress, and the
routine performance of health care roles is under pressure to change too
much and too rapidly for this to occur within the current structures. The
ordinary forms of communication of researchers, doctors, nurses, thera-
pists, patients, pharmaceutical industries, health care agencies, policy
makers, administrators, and insurance providers, among others, are no
longer adequate for the quality of care to match the availability of knowl-
edge without the creation of new facilitating roles and the implementa-
tion of changes to the current ones. It is not possible to offer a clear path
ahead for this process here. The detailed analysis of content and value
of knowledge using knowledge value mapping may be a way to develop
evidence to test the hypothesis.
NOTE
1. Translational research programs such as the one at the U.S. National Institutes of
Health appear to be efforts in that direction (see Offi ce of Portfolio Analysis and
Strategic Initiatives, n.d.). The systematic elaboration of knowledge value maps
does not seem to be a part of this program. It probably relies on informal versions
of such maps.
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373
14
Global health and development professionals recently identified new chal-
lenges facing the field of health communications. Attendees at “The Rome
Consensus,” a 2006 conference, also called the World Congress on Com-
munication for Development, identified community ownership of com-
munication by those who’s health was most affected by poverty and those
who were most underserved as a vital area in need of exploration as health
and development communication moves forward. In addition to commu-
nity participation, knowledge sharing, especially at the local and interna-
tional level, and evidence-based program planning have been called for in
order to ensure the continued success of health communication.
Global innovations in the field of health communication and, more
specifically, media landscaping have the ability to address these emerg-
ing challenges. Radio and television have been the predominant media
channels for health communication in the developing world. However,
as computers and other digital technologies become more widely avail-
able, innovation in health communication is slowly starting to shift to
Web-based and computer-based applications.
Media landscaping may be viewed as a collection of health and devel-
opment communication phases. Product-based communication, in which
International Innovations in
Health Communication
MUHIUDDIN HAIDER, SCOTT C . RATZAN,
AND WENDY MELTZER
The authors would like to thank Mila Gonzela and Casey Aldrich, who did the background research
work identifying and analyzing the case study.
374 Health Communication in the New Media Landscape
the development or health product (in the form of a program, knowl-
edge, or an actual good) is presented or sold to its audience, is the most
recognizable phase of media landscaping. Service-based communication
is the phase during which service organizations introduce their services
and products not only to the consumer but to each other as well in an act
of innovation diffusion. Finally, the organizational-based communication
phase can be seen as a public–private partnership of sorts wherein policy
makers, administrators, service providers, and development and health
professionals at all levels share program design elements, implementation
processes, and assessment indicators. Emerging technologies are expand-
ing the reach and utility of health and development communication.
Health communication specialists have long embraced electronic
channels as a means of furthering media landscaping. Public service
announcements, ads, and serial dramas are the standard forms of media
landscaping that have been disseminated via cinema, radio, and televi-
sion over the past 30 years. However, emerging electronic media tech-
nologies are changing the face of media landscaping. Existing media
landscaping initiatives take advantage of new technologies to scale
up existing initiatives. At the same time, emerging electronic media
technologies allow health communication specialists to offer personal-
ized communication messages on a mass media scale. New forms of
electronic media create opportunities for health communication spe-
cialists to reach new and larger populations while allowing for greater
user–message interaction. HIV/AIDS prevention, tuberculosis control,
access to clean drinking water, and promotion of improved reproduc-
tive health, as well as emerging health issues like the potential avian flu
pandemic will benefit from the implementation of new technologies.
However, it should be noted that in developing countries, traditional
methods of reaching the population still work and may remain the best
option for years to come. If there is access to technology, its use is com-
plicated by rampant illiteracy rates. But technology is still able to play a
critical role by expanding the reach of such forms of media.
Despite the changes in media landscaping occurring because of emerg-
ing technologies, the best practices study, which has been identified since
1962, still hold true today. This chapter reviews the literature and identifies
best practices associated with media landscaping. In addition, the chapter
will explore the effects of emerging technologies from a global perspective
through case studies describing recent innovations in media landscaping.
Change comes with many challenges, which will be further discussed.
Emerging technologies will also play an important role in the
nascent field of global health diplomacy in the coming years. Global
Chapter 14 International Innovations in Health Communication 375
health diplomacy confronts the developing relationship between inter-
national health concerns and politics. Increased movement of people
and goods across borders ensures that disease knows no boundaries.
Cooperation between sovereign states, international organizations, non-
governmental organizations, and multinational businesses is necessary to
confront existing and emerging health pandemics. Widespread threats,
such as HIV/AIDS and avian influenza, often require innovative media
messaging—media messaging that is adaptable and accessible over long
distances and that can be formatted for multiple audiences and technol-
ogies. The best practices for electronic media identified in this chapter
will prove valuable in meeting the challenges and fulfilling the needs of
global health diplomacy.
Technologies such as the Internet, digital broadcasting, and wireless
communication have the ability to cut across boundaries and borders in
a way that the limited electronic media of the past could not. Older elec-
tronic media such as radio and TV were limited in their reach. In addi-
tion, program content was often difficult to adapt and did not allow for
user interaction. User interaction is a new frontier, as we have seen with
the proliferation of blogs, chat rooms, personal broadcasts and wikis,
and community interaction on the Internet. This encourages collabo-
ration on a wide spectrum of topics. Health communication will take
notes from the business community, where such collaboration is key to
expanding the reach of concepts and new ideas, and join the growing
field of “wikinomics.” Emerging electronic media have the ability to
enhance global health diplomacy, as vital health communications can be
directed to citizens of multiple countries in real time.
Across health disciplines and geographic locales, certain health com-
munication practices have led to successful behavioral changes among
target populations. New best practices are being identified that are spe-
cifically associated with new technological media. The combination of
best practices identified in the past and the collection of the best prac-
tices that are currently being identified will help facilitate media land-
scaping campaigns in the future.
LESSONS FROM PAST EXPERIENCES
Some media landscaping best practices, such as the development of a
multimedia approach, the use of local resources to orchestrate, promo-
tion and delivery of health communication campaigns, and culturally
relevant messaging, will be useful no matter what technology is chosen
376 Health Communication in the New Media Landscape
to implement the campaign. These are described below and are sum-
marized in Table 14.1. These practices have laid the foundation for the
way the Internet and other digital communication strategies will be de-
veloped to address major international health problems.
Population Services International’s Condom Promotion
Campaign in Rural Kenya
In 1972, Population Services International began a condom promotion
campaign in rural Kenya using radio programs and ads (Black & Harvey,
1976). Population Services International wanted to take service-seeking
behavior (in this case, the provision of contraception) outside the clinical
setting and into the marketplace. The two goals of the intervention were
to improve contraceptive knowledge and awareness and to demonstrate
how local resources can be utilized to orchestrate, promote, and deliver
a health communication campaign. An inexpensive brand of condom
called Kinga was developed based on information from survey and in-
terview data. Population Services International used a local marketing
company to craft print advertisements and commercials promoting their
condom brand and family planning in general to be run at local cinemas.
An interactive radio program was aired once a week to answer ques-
tions concerning sex, family planning, and condom use. Over the course
of the 12-month marketing campaign, 56% of targeted merchants had
purchased Kinga condoms and 68% of consumers were aware of the
brand.
The Population Services International intervention in Kenya stands
as an early example of media landscaping, and its lessons have been uti-
lized by successive generations of health communication campaigns.
First, the messaging and materials being promoted were culturally
appropriate. Extensive pretesting was conducted to gather the opin-
ions and preferences of shopkeepers and consumers. Second, Popula-
tion Services International planned ahead and prepared the market for
their media landscaping message. Third, Population Services Interna-
tional worked with local agencies to pass along knowledge and ensure
sustainability. Finally, the Kinga promotional campaign delivered spe-
cific knowledge regarding the price and quality of Kinga condoms, as
well as a description, as opposed to messages promoting general family
planning. Condom use increased among survey participants, but so did
contraceptive knowledge and approval. These best practices have since
Chapter 14 International Innovations in Health Communication 377
OVERVIEW OF CASE STUDIES AND THE BEST PRACTICES THEY REPRESENT
CASE STUDY BEST PRACTICES REPRESENTED LOCATION
Kinga condom
promotion
campaign
Messaging and materials being promoted
were culturally appropriate.
Extensive pretesting was conducted.
The market was prepared for the media
landscaping message.
Local agencies were involved to pass along
knowledge and ensure sustainability.
The campaign delivered specifi c knowledge
regarding the price and description of a
product, as well as a description of the
product, rather than a general health
message.
■
■
■
■
■
Rural Kenya
Bienvenida
Salud
Bienvenida Salud broadcasts are self-con-
tained and draw subject matter from listen-
ers’ letters.
The program material was both culturally
relevant and created in conjunction with its
listeners.
Traditional beliefs from the community are
incorporated, and both community health
workers and traditional shamans act as pro-
gram advisors.
Characters and viewpoints on the program
represent older male members of society,
leading to a 30% male listenership.
Health communication initiatives touted on
Bienvenida Salud are tied to health
services.
Community health promoters go back to
serve as behavioral models for peers.
■
■
■
■
■
■
Central Peru
Vaccine Day
campaign
The media campaign was focused on a con-
centrated population with a high degree of
radio and TV access.
Health facilities were prepared for an in-
crease in demand
Clinics served as partners in the campaign.
Workshops and sales conferences we held
with clinic workers to ensure buy-in and
create partners in the campaign.
Specifi c knowledge (concerning age, lo-
cation, and cost) was provided, illustrat-
ing the importance of behavior-specifi c
messaging.
■
■
■
■
■
Philippines
Table 14.1
378 Health Communication in the New Media Landscape
been utilized in similar media landscaping campaigns and will continue
to be used in the coming years.
Bienvenida Salud of Central Peru
The radio program Bienvenida Salud in Central Peru is another example
of successful media landscaping fueled by audience participation and
service delivery. The 800,000 residents of Loreto, a region of Central
Peru, suffer from high rates of infant and maternal mortality, domestic
violence, unsafe abortion, sexually transmitted infections, and poverty
(Farrington, 2003). The area lacks paved roads, proper sanitation, and
telephone access, but 81% of Loreto residents listen to radio programs
and news broadcasts (Inter-American Development Bank, 2004). Eliana
Elías founded Minga Peru in 1998 to improve the lives of women in the
Peruvian Amazon native communities. Minga Peru’s signature product
is the radio program Bienvenida Salud (“Welcome Health”). Bienveni-
da Salud is broadcast three times a week and, unlike serial dramas, is
self-contained and draws its subject matter from listeners’ letters. These
letters are turned into mini-dramas with educational themes that are
performed by a cast of regular characters. Programs touch on the topics
of reducing violence in the community, the importance of self-esteem,
education for girls, the prevention of cholera, and much more. Over the
past 8 years, the program has broadcast over 1,000 episodes, received
5,200 letters, and reached 50,000 listeners (Minga Peru, n.d.).
Bienvenida Salud demonstrates many best practices in the world of
health communication. The program material not only is culturally rel-
evant but is actually created in cooperation with its listeners. Bienvenida
Salud incorporates traditional beliefs from the community and has both
community health workers and traditional shamans acting as program
advisors. Program listenership is 30% male, thanks in part to characters
and viewpoints on the program that represent older male members of
society. Health communication initiatives touted on Bienvenida Salud are
also tied to health services. Some listeners have been chosen to become
community health promoters. As an example of diffusion of innovation,
these women go back to their communities to serve as behavioral models
for their peers (Inter-American Development Bank, 2004). As a locally
conceived and produced health communication initiative, Bienvenida
Salud has a great deal to teach about best practices in the field of media
landscaping. The program goes beyond making culturally relevant mate-
rial and brings listeners into the creative process.
Chapter 14 International Innovations in Health Communication 379
Vaccine Day Campaign in the Philippines
Hundreds of thousands of children die each year as a result of vaccine-
preventable diseases. Vaccine delivery is often compromised by poor
logistical knowledge on the part of consumers or poor vaccine supply re-
sulting in missed vaccinations. In the Philippines in the late 1980s, vac-
cination rates among urban children were worse than those among rural
children. The government developed a mass media campaign aimed at
the mothers of vaccine-eligible children (Zimicki et al., 1994). Radio and
television ownership rates among urban households were 73% and 63%,
respectively, and 50% claimed to own both. The government created
radio and TV ads, which urged mothers to vaccinate their children from
the measles. These ads delivered information concerning the age of vac-
cine-eligible children (38–52 weeks), days on which vaccines could be
obtained (every Wednesday), and the cost of vaccinations (free).
After a 7-month campaign, survey results revealed a substantial
increase in vaccination rates and knowledge about vaccines. Survey
results also revealed a high degree of knowledge concerning the vac-
cine awareness campaign. Over 70% of survey participants reported
seeing an advertisement, could complete campaign slogans, and could
recall specific information from the advertisements. Much of the suc-
cess of the program was due to proper planning on the part of the Fili-
pino government in conjunction with action-oriented messaging. The
media campaign was focused on a concentrated population with a high
degree of radio and TV access. This population also had easy access to
health facilities, which were prepared for an increase in demand. Health
communication campaigns must be tied to the direct provision of care,
and the Filipino government ensured that their clinics served as part-
ners in the campaign. The workshops and sales conferences held with
clinic workers ensured their buy-in and made them active partners in
the campaign.
The provision of specific, as opposed to general, knowledge played a
large role in the campaign’s success. Increased knowledge of the impor-
tance of vaccination does not necessarily correspond to service-seeking
behavior. It was for this reason that campaign planners decided to pro-
vide specific knowledge (concerning age, location, and cost) in an effort
to effect service-seeking behavior. Analysis of survey data conducted
several years later found that it was service-specific media messaging,
above and beyond interpersonal communication or other influences,
that drove the service-seeking behavior (McDivitt, Zimicki, & Hornik,
380 Health Communication in the New Media Landscape
1997). The Filipino Vaccine Day campaign illustrates the importance
of advanced planning and behavior-specific messaging in a successful
media landscaping campaign.
EMERGING TECHNOLOGIES
Taking the knowledge described above, future communication cam-
paigns will try to address the persisting access barriers to information
and communication technologies in many underserved populations,
while moving toward more tailored and technology-specific programs.
If computer-based technology is the most implemented new technology,
the digital divide suffered by vulnerable and underserved populations in
developing countries may translate into significant health care dispari-
ties. Although developing countries are increasing their use of technol-
ogy, so are developed countries, and as a result, the divide continues to
exist and perhaps widen (Sattelife, 2005). On the flip side, mass media
campaigns allow for widespread but potentially incomplete education.
A more tailored approach, as is possible with emerging technologies, al-
lows for a more comprehensive learning experience that gives users the
opportunity to fill in gaps in their knowledge or dispel myths. Following
are some examples of international innovations in health communication
utilizing emerging technology.
Scaled-Up Initiatives: Digital Broadcasting Initiative
The Digital Broadcasting Initiative (DBI) is a public–private alliance
between USAID, UNDP, the World Bank, WorldSpace, Equal Access,
and several Nepalese NGOs. The DBI sought to scale up the utility and
popularity of radio media landscaping among the poor and marginalized
through the use of emerging technologies (Digital Broadcasting Initia-
tive, n.d.). Realizing that many of the poorest communities are too far
from radio transmitters to receive targeted health communication mes-
sages, the initiative seeks to deliver these messages via digital satellite
broadcasts to inexpensive hand-powered digital radios across Asia. Be-
cause the application is digital, it has the ability to stream data, video,
audio, and more.
The DBI began an intervention in Nepal to overcome the barriers
to communication presented by internal conflict, poverty, and terrain.
Nepali-language programming was produced with local input and set
Chapter 14 International Innovations in Health Communication 381
to broadcast via satellite to a small number of these digital radios as an
experiment in expanding access. The Nepali-language program, named
Aphnai Mato, Aphnai Bato (“Our Land, Our Path”), would be pro-
vided in addition to English-language news and programming. Content
for Aphnai Mato dealt with early childhood development, HIV/AIDS,
human rights, conflict resolution, and safe migration education (for the
increasing number of Nepali men who seek work outside Nepal). To
date, 400 digital radio sets have been delivered to 400 rural communi-
ties, and content is rebroadcast over Radio Nepal and traditional FM
stations. The Katmandu office is growing quickly and recruiting local
talent to act as program developers and disc jockeys (Westberg, 2006).
Despite a number of logistical mistakes and setbacks, the DBI
drew upon best practices in health communication when planning a
media landscaping campaign with emerging technologies. Local buy-in
was one important aspect of the DBI’s program planning. The project
worked in conjunction with the Nepali government to gain its input and
blessing. Content development and outreach teams worked with local
participants to create, produce, and market original programming. Con-
tent management sought to incorporate listener input in content devel-
opment to ensure cultural relevancy while addressing the needs and
concerns of the community (Digital Broadcasting Initiative, n.d.). The
DBI also succeeded in sharing knowledge and skills with its in-country
partners. Local production organizations have sprung up in the wake of
the DBI and produce educational and entertaining content for broad-
cast through digital and FM broadcasters across Nepal. Many of the
programs now produced through the DBI better reflect local concerns
(such as hygiene, conflict resolution, and women’s health issues), as the
infrastructure has matured considerably (Westberg, 2006). In addition
to these successes, the DBI identified concerns and problems associated
with emerging communication technologies.
The DBI health communication intervention adds much to the body
of knowledge concerning the upgrading of existing media landscaping
with emerging technologies. First, the technical equipment itself poses
certain problems. The digital radios, which are produced in India, were
held up in customs, which delayed implementation of the program.
The digital broadcasting equipment experienced technical glitches
associated with inclement weather (Westberg, 2006). In addition, local
program administrators of the DBI required training (albeit relatively
simple training) in the technical aspects of the program in addition
to the various health messages (Digital Broadcasting Initiative, n.d.).
382 Health Communication in the New Media Landscape
Interventions with emerging communication technologies will require
greater advanced planning dedicated to technological aspects of the
program in addition to any service or messaging aspects.
Second, communication breakdowns within the DBI drove the pro-
gram off focus. Because of outside pressures, the project was upgraded
too quickly and content began to reflect what could be produced as
opposed to what was intended. Many of DBI’s health intervention targets
(such as HIV/AIDS and childhood development) were determined by
funding priorities, and the feedback channels broke down quickly, lead-
ing to very little audience participation in the beginning. Intra-program
communication issues may pose particular problems for interventions
utilizing emerging technologies because of the need for communication
among technology, health, and marketing specialists.
Finally, the financial costs and benefits of emerging technologies
cannot be ignored. The digital radios were over $100 each, and tech-
nological glitches added additional costs. However, there were cost sav-
ings associated with the use of digital broadcasting as well. The physical
infrastructure associated with overland communications was eliminated,
and much of the DBI equipment was solar or powered by a manually
operated crank (Westberg, 2006). The DBI media landscaping experi-
ment can be considered a success, no matter the outcome, because of
the valuable lessons it teaches in regards to utilization of new technolo-
gies for health communication.
Responsive Messaging
The New Zealand Ministry of Health (2007) made use of emerging
technologies to create an adaptive and comprehensive communications
platform regarding avian influenza. As a new and potentially deadly com-
municable disease, avian influenza received extensive media coverage
in 2005 and 2006. However, little media attention was given to instruc-
tions for preparedness or precautions, and the public was left with little
service-oriented knowledge. The government of New Zealand began, in
late 2005, to construct a multipronged response to avian influenza suited
to actual threat levels and targeted at specific audiences. In addition to
commercials, radio announcements, and surveillance activities, the Min-
istry of Health created a comprehensive Web site to host educational and
service-oriented materials. Everything the Ministry of Health created
and disseminated in response to avian influenza led back to its Web site,
which served as a single portal for the government’s information on the
Chapter 14 International Innovations in Health Communication 383
potential pandemic. The site provides information on threat levels and
definitions and historical background for citizens, travelers, health pro-
fessionals, and business owners. Links to relevant health care providers,
first responders, government services, and hygiene tips are all included
on the Web site as well.
The Internet allowed the New Zealand Ministry of Health to create
an interactive and adaptive platform for disseminating avian influenza
information. Section headings allow specific audiences to find the infor-
mation and services most relevant to them. Users can also follow links
to information on avian influenza for other countries and links to global
organizations for tips on preventing the spread and infection of avian
influenza. As a platform, the Internet allows for adaptation as the situ-
ation changes. The new and alarm-inducing nature of avian influenza
almost guarantees that information regarding prevention and treatment
best practices will change on a regular basis. Web sites, even more than
print, radio, and TV, allow for adaptability and change in the face of new
information and situational changes.
In addition to delivering adaptable content, the Ministry of Health’s
Web site delivers service-oriented information. Much of the information
is geared toward specific actions that can be taken in specific situations.
The tailored messaging allows for action-oriented instructions. Guide-
lines and advice for businesses, for example, include recommendations
for ventilation control and air recirculation during an outbreak. The
business section includes a planning guide for offices and health posters
to prevent the transmission of airborne pathogens. Sections aimed at
health care workers provide information on how to establish a commu-
nity-based assessment center for rapid assessment and triage for at-risk
populations. This section also includes training guides and exercises for
clinic staff. The New Zealand Ministry of Health’s Web site provides
information aimed at a variety of groups, each of which will have its own
distinct concerns and responsibilities in the event of an avian influenza
outbreak. In addition, the Web site goes beyond information dissemina-
tion and provides tools and services to its users.
Women Connect! The Use of New Communication
Technologies for Reproductive and Sexual Health
Promotion
The 1994 International Conference on Population and Development in
Cairo determined that women’s empowerment is essential for sustainable
384 Health Communication in the New Media Landscape
development. The conference acknowledged that issues such as HIV/
AIDS, unintended pregnancy, and gender-based violence require the
involvement of women’s NGOs and other civil society organizations that
have strong links with communities. In 2002, the International AIDS Con-
ference in Barcelona concluded that the lower social position of women
and their vulnerability in society contribute directly to the AIDS epidemic.
Therefore, women’s organizations that address these issues by educating
the community and developing grassroots efforts to ensure the protection
of women are deemed a good investment.
After the conference in Cairo, the pressing question within the inter-
national community was how to increase the dialogue among women
about family planning and empower them to make decisions about
contraception and other sexual health concerns. A multi-country evalu-
ation conducted by the Pacific Institute for Women’s Health and the
Global Fund for Women found that women’s NGOs have much direct
and indirect positive impact in family planning and contraceptive use
through well-targeted messages in their communication and outreach
work. However, one of the limitations of many of the women’s NGOs
was that they were in need of technical assistance to improve efficacy.
A 5-year initiative to support women’s NGOs in developing countries
called Women Connect! was created with the aim of improving health
communication activities in order to enable the NGOs to be more effec-
tive in their impact in the community. Zimbabwe, Zambia, and Uganda
participated in this program, but the lessons learned could apply to wom-
en’s NGOs throughout Africa, Asia, and Latin America. The conceptual
framework and design of Women Connect! is based on health from the
perspective of a women’s NGO, the use of information communication
technology, and the need for women’s organizations to use traditional
media more appropriately.
The UN Economic Commission for Africa, which made NGOs’
development of information communication technology capacity a top
priority in 1999, emphasized the need for a more appropriate use of
traditional media. In fact, most women in the developing world have
less access to information technology than do men of the same eco-
nomic level. Access and use of these technologies are directly linked
to social and economic development; thus, it is important to guarantee
that women in developing countries understand these technologies and
have access to them. The technological limitations of women’s NGOs
in developing countries also present a barrier, as many of the resources
available are not reaching those women in need.
Chapter 14 International Innovations in Health Communication 385
The aim of the initiative was for women’s NGOs not only to build
information communication technology capacity but also to learn how
to use modern media channels strategically in order to improve their
impact in the community. Some activities developed to improve their
skills in this area were training workshops and technical collabora-
tions. Initially, 29 grants were given out to NGOs that rarely con-
ducted research in order to assess perceptions and behaviors and to
evaluate whether people understood the disseminated messages. Dur-
ing the implementation of these initial grants, 12 NGOS addressed
these issues through community publications and by developing tradi-
tional media campaigns, conducting research, and repackaging infor-
mation from the Internet for dissemination to low-literacy audiences
and translating it into local languages. The other 17 NGOs focused
on developing information communication technology capacities in
order to increase the reach of health information and the access to
technologies by women in these communities. Women’s Internet
cafés were created in Zimbabwe and Uganda to function as Internet
learning centers. The Uganda Private Midwives Association devel-
oped a series of health tips from reliable Internet sources on antena-
tal care, safe motherhood, and infant nutrition and broadcast the tips
via radio programs. Web site development was an important step for
some of the women’s NGOs. Pillsbury and Mayer (2005) found that
there was great demand for up-to-date health information and inter-
est in downloading and repackaging women’s health information from
the Internet. However, introducing new technology into an organi-
zation causes changes that place pressure on systems, relationships,
communication, and management styles (Pillsbury & Mayer, 2005).
Therefore women’s NGOs engaged in advocacy and outreach should
consider implementing well-researched campaigns using multiple
forms of media.
Sattelife Handhelds for Health: Uganda Health
Information Network
A collaborative project was launched by the Uganda Chartered HealthNet,
AED-Sattelife, Makerere University Medical School, and Connectivity
Africa of the International Development Research Center of Canada
to expand access to health and medical information and support data
collection and analysis through the use of PDAs connected via the local
GSM cellular telephone network.
386 Health Communication in the New Media Landscape
The project attempted to address the fact that although a rural area
in Uganda might have a medical clinic, it is less likely that the clinic has
access to information that may be necessary for diagnosis or treatment.
There are few medical libraries in Uganda, and health workers lack the
time to visit them (Sattelife, 2005). A PDA solves that problem by pro-
viding a virtual library that can be accessed anywhere and anytime. In
addition, these handheld computers provide a mechanism for storing
and transmitting information in a country where data collection is dif-
ficult to achieve.
Two years from the program’s start, more than 120 remote facilities
serving more than one million people who lack Internet access and even,
possibly, electricity are able to send and receive regular transmissions of
information. Uganda has one of the highest burdens of disease in the
world and also some of the best cellular telephone coverage in Africa,
which makes this project particularly relevant (Sattelife, 2005).
The cellular network was used for both information dissemination
and data collection. There were regular broadcasts that provided health
information from Sattelife’s information services; continuing medical
education and health updates on malaria, HIV/AIDS, and tuberculosis;
and treatment updates. Field workers also used their PDAs to collect
data for routine reporting. The project demonstrated cost effectiveness,
contributed to increased compliance in disease surveillance, improved
data quality at the point of collection, and allowed for a faster response
to emerging situations. The project also allowed health workers access
to information and materials without the need for travel to distant head-
quarters (Sattelife, 2005).
Though there were technical glitches, Uganda Health Information
Network had success in creating an effective data network over a mobile
telephone infrastructure. It was done in a way that was relatively afford-
able and sustainable. Uganda Health Information Network was able to
combine the power of data collection with continuing medical educa-
tion, providing information to health workers isolated in rural areas, and
may ultimately be able to provide e-mail access via the PDA devices.
Future Trends: Audience Targeting
The Internet allows for sensitive health-related issues to be dealt with
privately while opening the door for greater user interaction with
health messages. A team consisting of Stanford media, marketing, and
health specialists, has put together “Interactive Teaching AIDS” (2007),
Chapter 14 International Innovations in Health Communication 387
an HIV/AIDS educational tool aimed at the vulnerable population of
those between the ages of 18 and 24 in India. The program is an ani-
mated doctor–patient scene addressing what HIV/AIDS actually is,
how it works, how it is transmitted, and how to protect oneself from the
disease. The educational message is aimed at Indian youths who may be
too afraid or ashamed to seek information concerning HIV and its routes
of transmission. The program can be delivered to computers and mobile
devices to enhance privacy and is a stand-alone educational tool, mean-
ing no human interaction is required. The program content focuses on
the biological and clinical aspects of HIV/AIDS and largely avoids sensi-
tive or embarrassing sexual issues. Users control the pace of the presen-
tation and may follow links online to either delve deeper into the issue
or find answers to lingering questions.
HIV/AIDS messaging is most often handled in India by mass media
outlets, which allows for a widespread but incomplete education. This
incomplete education can lead to misconceptions and rumors surround-
ing the HIV virus and how it is transmitted and create a stigma for those
who are infected. “Interactive Teaching AIDS” allows for a more com-
prehensive learning experience that gives users the opportunity to fill in
gaps in their knowledge or dispel myths.
“Interactive Teaching AIDS” makes good use of existing knowledge
of best practices in health communication while harnessing the increas-
ing power of the Internet as a communications tool. The program’s for-
mat is appealing to users and is based upon extensive interviews and
an institutional review board–approved study conducted in India. These
findings indicated that users were most comfortable with information
presented in a cartoon format (Technology, Health and Development,
2006). All content was created and tested to be specific to the target
audience. There are “male” and “female” versions of the program with
their own specific culturally understandable appearances and expres-
sions, existing in several different languages. The visuals and teaching
methods reflect institutional review board survey research findings and
are meant to increase user comfort with the material being presented.
Each section of the program was created with the help of feedback from
students and other potential users.
One of the criticisms that can be made of “Interactive Teach-
ing AIDS” is that it does not build local health communication capac-
ity. There was no transfer of knowledge to in-country institutions, and
besides a funding connection for a general Asian version with the South
Korean government, no local partners were established (Technology,
388 Health Communication in the New Media Landscape
Health and Development, 2006). This can be forgiven, however, because
of the importance of the subject matter and what it teaches us about the
use of emerging technologies for media landscaping.
Teaching modules produced for distribution over the Internet allow
for greater diffusion, both geographically and technologically. While
“Interactive Teaching AIDS” was originally created for Indian users, a
general Asian version has been produced in conjunction with the South
Korean government. At the same time, producers are currently work-
ing on culturally appropriate versions for Latin American and African
audiences as well (Interactive Teaching AIDS, n.d.). Just as “Interactive
Teaching AIDS” is not confined to the Indian subcontinent, nor is it
confined to computers. The program could be delivered to consumers
via a wide variety of electronic networked platforms. Cell phones, PDAs,
and portable electronic music platforms such as iPods could download
and run the program. “Interactive Teaching AIDS” program managers
are currently working with Indian cell providers to make the educational
tool available over cellular networks (Technology, Health and Develop-
ment, 2006). Personal handheld electronics allow for the greatest degree
of privacy for users and could change the way in which sensitive educa-
tional material is delivered to consumers. The program is worth watch-
ing as an example of a new project in emerging technology.
LIMITATIONS OF NEW TECHNOLOGY IN THE
DEVELOPING WORLD
The term “e-health” is defined as the application of emerging informa-
tion and communication technologies, such as the Internet, to improve
population health (Eng, 2001). The use of new technologies has a major
impact in the media landscape by addressing some of the limitations of
traditional communication paradigms. E-health communication offers a
unique environment where concepts of customization, interactivity, and
mixed media can be successfully applied (Neuhauser & Kreps, 2003).
E-health technologies could resolve long-standing global health prob-
lems through improved tailoring of information and the expansion of
mixed media channels (Eng, 2004; Neuhauser & Kreps, 2003). And e-
health technologies can extend the reach of programming already devel-
oped, as in the case of online broadcasting of radio interventions (Davis,
2005). In the last decade, computer-based technology has been the most
implemented new technology (Suggs, 2006). Today, even telephone
Chapter 14 International Innovations in Health Communication 389
technology is dependent on computers, and other new technology ap-
plications that are computer based include CD-Roms, PDAs, Web
sites, touch-screen computer kiosks, and customized software programs
(Noar, 2006; Suggs, 2006).
But where does this innovation leave developing countries, where
even if there is access to technology, its use is complicated by rampant
illiteracy rates? At the United Nations World Summit on Information
Society in 2005, leaders put forth a new level of commitment within
the United Nations development agenda that specifically focused on
the innovative use of computers, handheld devices, landline and wire-
less telephones, radio and television, and other technologies in order to
address development goals and other challenges such as the improve-
ment of health outcomes. There is evidence to support the idea that
reducing access barriers to new technologies is not impossible, as shown
by the success of mobile telephony in connecting those previously
unconnected as well as the positive impact it has had in the develop-
ment of telecommunications markets (United Nations Economic and
Social Council, 2006). For instance, more than 60% of the increase in
telephone access in 2005 happened in developing countries, where wire-
less phones now outnumber landline connections (Eng, 2004).
It is also worth noting that even if a technology is successfully
introduced, it may not result in improved results. A recent example
is a pilot study using SMS text messages to increase patients’ compli-
ance with TB medication regimens in South Africa. Though both the
patients and health care workers liked the service and were able to use
cellular technology, a significant number of patients interviewed were
not using the service as instructed. As the study’s authors put it, “This
technology is not a silver bullet to solve the problem of patient adher-
ence: it is all down to the way in which it is implemented” (Hüsler &
Peters, 2005).
Despite the excitement surrounding the development of new tech-
nologies, it is important to recognize the invaluable role of old technology
such as radio and television in promoting health in developing countries.
Radio and television are still indispensable in regions like sub-Saharan
Africa and the Maghreb, since these are still the main channels of com-
munication that enable poor and marginalized populations to access
information and dialogue (World Electronic Media Forum II, 2005).
In 2005, Bourem Inaly, Lerneb, and Almoustarat in Mali were 3 of 14
communities that inaugurated new FM radio stations, for which USAID
provided the equipment and technical training. For countries such as
390 Health Communication in the New Media Landscape
Afghanistan, which has illiteracy rates reaching 70%, radio is essential
for communication strategies to raise awareness about breast-feeding
practices and other issues concerning maternal and child health. That
is not to say that new technology cannot enhance older forms. In Mali,
about 96% of the population receives information about the dangers of
HIV/AIDS through the network of community radio stations. Mali has
adopted innovative information communication technology applications
such as geographic information systems software as part of the HIV/
AIDS surveillance efforts in order to target HIV/AIDS high-risk areas,
thus guaranteeing that radio messages on HIV/AIDS prevention reach
these areas (USAID, 2004).
Wireless technologies can connect desktop computers to the Inter-
net and provide communities that lack telephone lines with Internet
connectivity. Mobile Internet devices target many of the barriers in
developing countries, including the lack of convenient access points,
lack of access in rural areas, the cost of the technology. Connectivity
thus far has varied widely throughout the world. For instance, Ethiopia
lacks any telephone infrastructure and has very few mobile subscrib-
ers. In contrast, although Madagascar has a poor communications infra-
structure, it has experienced an increase in the number of wireless users
(Maxfield, 2004).
In rural Bolivia, the introduction of these new technologies in the
public health sector has lifted many access barriers to family planning
and to reproductive health information and services (USAID, 2004). In
addition, Martínez, Villaroel, Seoane, and del Pozo (2005) assert that
computer-based systems integrated with a voice system have the poten-
tial to improve epidemiological surveillance, emergency management,
consultations, and distance training of health professionals in isolated
rural communities. Consequently, because of the common limitations
between the communication networks in Latin America and those in
other developing countries, conditions for success include the use of
technology with low operational costs, a simple infrastructure, and low
maintenance (Martínez et al., 2005).
CONCLUSION
Proven health communication best practices will continue to drive
successful media landscaping initiatives with emerging technologies.
Mass media landscaping, developed in 1962, has helped identify which
Chapter 14 International Innovations in Health Communication 391
initiatives have proven to work. New technologies will continue to take
advantage of these proven techniques. New technologies, however, will
run afoul of new pitfalls in the field of health communication. Greater
investment in research and the development of emerging communica-
tions technology is necessary. It will be necessary to identify what still
works, what will work, and what will no longer work when it comes
to media landscaping with new technologies. At the same time, re-
search and development must focus on linking these communication
messages with health services. Whether or not these new media will
lend themselves to more, less, or the same amount of service-seeking
behavior is yet to be learned. Finally, utilizing these new technologies
for media landscaping will only exacerbate the digital divide unless
local capacity is seen as an essential element of health communication
efforts. Fortunately, many of these new technologies are proving easier
to upgrade than older variations (cellular technology is spreading at a
much greater pace than its land-based precursor) and are overcom-
ing the digital divide. Other technologies, however, demand a more
conscious effort to expand to poorer, more isolated populations. This
expansion not only will require added infrastructure but will also de-
mand increased training to ensure that it is utilized and maintained at
the local level.
Media landscaping interventions, developed in 1962, have identified
a series of best practices for those utilizing electronic media as a means
of health communication. Successful health communication campaigns:
Produce culturally relevant material
Involve local stakeholders and pass along valuable knowledge
Provide specifi c knowledge rather than general knowledge to
affect behavior
Tie their programs to service delivery
Engage in advanced planning
The interventions discussed in this chapter drew upon these ele-
ments, to varying degrees, in order to build successful media landscap-
ing campaigns. Emerging electronic technologies have the potential to
overcome the limitations of older means of communication. However,
the lessons learned and best practices identified will continue to be as
relevant tomorrow as they are today.
Successful media landscaping programs using emerging electronic
media borrow from many of the best practices discussed in this chapter
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392 Health Communication in the New Media Landscape
while identifying new areas of concern. In addition to the concerns of all
media landscaping programs, emerging electronic media necessitate:
Technological planning in addition to health and media planning
Increased communication among multiple organizations (health,
technology, and media partners)
A recognition of both increased costs and cost-savings associated
with new technologies
Awareness of opportunities for greater diffusion of innovations
Planning for integration in multiple platforms
Fittingly, the examples of media landscaping with emerging elec-
tronic media examined above identified both advantages and disad-
vantages associated with new technology. While nothing concrete may
be identified from this small sample of media landscaping programs,
the examples give an indication of both the new issues and the possible
advantages that arise with emerging technologies.
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395
15
Collaboration between health communication and biomedical informat-
ics is central to an exciting, cross-cutting future for new media research
in health and health care. Health communication and biomedical infor-
matics are both young fields that are “cognate” or fundamentally related
in their shared interest in communication of information using techno-
logical channels. Here, we introduce each field to the other.
This chapter maps overlapping and related research interests and
variables, identifying and illustrating with examples where these fields
overlap as well as how each makes unique contributions. The chapter
identifies benefits for each in the use of both together in the conduct
of research. In these ways we support the call for a more systematic
approach in interdisciplinary health services research (Aboelela et al.,
2007). These objectives were accomplished through reviews of both
bodies of literature for representative self-definitions and operational
descriptions, as well as early intimations of what is possible when the
fields coordinate effort. Collaboration is occurring; indeed, the National
Cancer Institute has a Health Communication and Informatics Research
Branch, which reflects the strength of knitting the two domains together
to address challenging research and outreach questions. But greater op-
portunities exist, and growth in productive collaboration between re-
spective scholars starts with a general understanding of the research foci
Connecting Cognate Fields:
Health Communication and
Biomedical Informatics
BRIAN K . HENSEL , SUZANNE A . BOREN,
AND GLEN T. CAMERON
396 Health Communication in the New Media Landscape
of the other field. The chapter is written for audiences in both fields; thus
both are defined and described in some detail. Biomedical informatics
is defined and described first, then health communication, followed by
a discussion of overlapping research foci with examples of collaborative
opportunities.
BIOMEDICAL INFORMATICS
The umbrella label of biomedical informatics evolved from the earlier
label of medical informatics in recognition of newer applications in bi-
ological sciences (Friedman et al., 2004; Greenes & Shortliffe, 1990).
Biomedical informatics includes bioinformatics and medical informat-
ics. For clarity, and because we view health communication’s current
overlap with each as different, medical informatics and bioinformatics
are defined and described separately.
Medical Informatics
Greenes and Shortliffe (1990) define medical informatics as “the field
concerned with the cognitive, information processing, and communica-
tion tasks of medical practice, education, and research, including the
information science and technology to support these tasks” (p. 1115).
They identify tasks (cognitive, information processing, communication),
broad areas of application (medical practice, education, and research), the
general tool (technology), and a primary component discipline
(information science) of the field. Shortliffe, Perreault, Wiederhold, &
Fagan, (2001) define it as “a field of study concerned with the broad
range of issues in the management and use of biomedical information,
including medical computing and the study of the nature of medical in-
formation” (p. 785). Here, the focus is broader than that of the previous
tasks, and we see movement toward bioinformatics in its recognition of
both biological and medical information. Another definition is deliber-
ate in its inclusion of health care beyond medical care: “Medical infor-
matics comprises the theoretical and practical aspects of information
processing and communication, based on knowledge and experience de-
rived from processes in medicine and health care” (van Bemmel, 1984,
p. 175). J. van Bemmel and Musen (1998) include public health in their
definition of medical informatics as “informatics applied to medicine,
health care, and public health.”
Chapter 15 Connecting Cognate Fields 397
Harrison (1984) observed that the word “informatics” is used in the
label biomedical informatics at least in part to “encompass [the] conglom-
erate of knowledge . . . [in] science, engineering, and technology” (pp.
939–940). Informatics, from the French term informatique (Greenes &
Shortliffe, 1990),
represents the conjunction of information science and information technol-
ogy. It is the formal study of information, including its structure, properties,
uses, and functions in society; the people who use it; and in particular the
technologies developed to record, organize, store, retrieve, and dissemi-
nate it. (Reitz, 2004)
This definition identifies what about information is of interest to
informatics (i.e., its structure, properties, uses, and functions), and how
technologies of interest operate on information (they record, organize,
store, retrieve, and disseminate it). Furthermore, it establishes that,
in addition to information and technology, informatics is interested in
human factors related to their use. According to another definition,
informatics is “the science that studies the use and processing of data,
information, and knowledge” (van Bemmel & Musen, 1998). Data are
“simple facts,” information is “an interpretation of data that relates or
puts into some context individual data,” and knowledge is “information
that is true or correct, incorporated into a system of belief, and believed
with good reason” (Patrick, 2005, p. 100). (The word “information” will
be used generically in much of this chapter.)
Functions of Medical Informatics Technologies
Core functions that medical informatics applications fulfill for their
users include information retrieval, decision support, patient monitor-
ing, and image production (Shortliffe et al., 2001). Examples in a clinical
context include retrieval of a patient’s electronic medical record. Deci-
sion-support tools assist health professionals in clinical and managerial
decisions and are based on the knowledge of experts in given domains
(Musen, Shahar, & Shortliffe, 2001). Patient monitoring applications
collect, display, store, and interpret physiological and other health data
of patients in institutional settings such as hospitals (Gardner & Shbot,
2001) and even in the home (Demiris, 2005). In imaging informatics,
radiological scans of patients use digital images and are used for diag-
nostic and interventional purposes. Examples of imaging informatics in
398 Health Communication in the New Media Landscape
an educational context include the Visible Human project, which ren-
ders digital photographs of human cadaver cross-sections into three-
dimensional images (Greenes & Brinkley, 2001).
Component Sciences
Turley (1997) identifies three core component sciences of nursing in-
formatics that are fundamental to other domains of medical informat-
ics: information science, computer science, and cognitive science. She
describes information science’s central role in developing ontologies
and taxonomies to organize information and knowledge. An ontology is
“an explicit specification of a conceptualization” (Gruber, 1993, p. 199).
Cognitive sciences assist in examining how information should be or-
ganized and displayed to best support the ways in which human users
process and use it. Friedman and associates (2004) identify the following
“basic informational and computing sciences” as important to biomedi-
cal informatics: computer science, information and telecommunications
science, cognitive science, statistics, decision science, and management/
organizational science. These largely mirror Turley’s components, while
making explicit the related disciplines of telecommunications, statis-
tics, and decision sciences, and adding management/organizational sci-
ence. This addition recognizes that the management, organization, and
leadership of medical informatics’ initiatives are crucial to their success
(Brown, 2005). Li, Mitchell, Tian, and Rikli (1995) identify the “struc-
ture of medical informatics knowledge” as including medical or clini-
cal domains, computer and systems theory, engineering equipment and
methodology, and health services management.
Medical informatics must rely on multidisciplinary efforts to bring
the necessary expertise to its questions and problems. Greenes and
Shortliffe (1990) illustrate this with the doctoral thesis work of a physi-
cian student of theirs, the goal of which was to determine how empirical
findings from the literature are used by expert anesthesiologists and how
that knowledge could serve as the basis for a computerized anesthesiol-
ogy advice system. This work, and the fields of expertise of members of
the student’s doctoral committee, involved the use of computer science,
clinical medicine, biostatistics, and artificial intelligence.
Musen (2002) assists our understanding of the field in terms of
its practical applications as well as what he sees as its uniqueness
as a science. The field has contributed greatly in building what he
labels artifacts, such as physician software systems. He recognizes the
Chapter 15 Connecting Cognate Fields 399
importance of research in the development, deployment, and evalua-
tion of such artifacts and that “satisfying institutional requirements for
clinical data management . . . provided the substrate for much of the
seminal research in medical informatics” (p. 13). But Musen argues
that medical informatics’ uniqueness as a separate science lies in its
capacity to develop ontologies and problem-solving methods neces-
sary for representing knowledge and reasoning in medicine. He iden-
tifies the Medical Subject Headings hierarchy for indexing biomedical
literature as an exemplar of ontology construction, and computational
algorithms used in genetic sequencing (in bioinformatics) as an exem-
plar of problem-solving methods. He bases his argument in part on
Blois’s (1984) contention that the field of medicine is unique as an
area of human endeavor in its vast hierarchy of information levels.
Clinical knowledge depends on “understanding other knowledge that
can be defined only at lower levels of abstraction (e.g., that of organis-
mal biology), which in turn can be understood only in terms of knowl-
edge that needs to be defined at still lower levels of abstraction (e.g,
that of biochemistry), and so on” (Musen, 2002, pp. 14–15). Musen’s
arguments are important for understanding that medical informatics
is about more than the artifacts it develops, and that much of its basic
work is done “behind the curtain” of these visible technologies.
Application Domains
At its inception, some questioned labeling the field medical informatics
because, although actually defined more broadly to include “all parts
of the health care arena” (Stead, 1987 p. 14), it implied a discipline re-
stricted to physician use and application. With a broader, more inclusive
definition in mind, Figure 15.1 reproduces Shortliffe and Blois’s (2001)
conceptualization of the field, including its application domains.
Figure 15.1 Application domains of medical informatics.
Note. From Figure 1.16 in Medical Informatics: Computer Applications in Health Care and Bio-
medicine, 2001, p. 29. With kind permission of Springer Science and Business Media.
400 Health Communication in the New Media Landscape
Here, medical informatics is the umbrella science whose methods,
techniques, and theories are applied to a number of domains, including
veterinary and dental sciences. Each domain includes research, educa-
tional, and practical applications. Nursing and imaging informatics are
ultimately focused on patient care and thus are included under clinical
informatics in this chapter. Shortliffe and Blois (2001) include consumer
health informatics under public health informatics. We view consumer
health informatics (which is consumer driven) as fundamentally differ-
ent from public health informatics (which is provider driven). In this
chapter, clinical, public health, and consumer health informatics are
defined and described, followed by bioinformatics.
Clinical Informatics. Clinical informatics is defined as “the application of
medical informatics methods in the patient care domain” (Shortliffe et
al., 2001, p. 756). Flow and use of electronic information have been pre-
dominately within individual health care systems and between providers
and payers. Patients’ access to their own electronic medical records has
been limited (Kukafka, 2005).
Public Health Informatics . Public health informatics is “the application
of information science and technology to public health practice and re-
search” (Friede, Blum, & McDonald, 1995, p. 240). It is concerned with
epidemiological surveillance of populations, with information gathered
through disease registries (especially for cancers) and methods such as
periodic surveys and special studies (Brennan & Friede, 2001). Pub-
lic health informatics is also used in tracking environmental hazards to
health, such as air pollution and chemical toxins (Brennan & Friede,
2001); supports public health departments in disease prevention
(e.g., immunizations); and can be used in health promotion campaigns
(e.g., Internet-based anti-smoking campaigns).
Consumer Health Informatics . Eysenbach (2000) defines consumer health
informatics as “the branch of medical informatics that analyses consum-
ers’ needs for information; studies and implements methods of making
information accessible to consumers; and models and integrates consum-
ers’ preferences into medical information systems” (p. 1713). The end
user here is not the health care or public health provider; it is the health
consumer and the consumer-patient as coproducer of his or her health
care (Brennan & Friede, 2001). Information sources outside of clini-
cal and public health informatics are included (e.g., mass media). In an
Internet-based survey of members of the American Medical Informatics
Chapter 15 Connecting Cognate Fields 401
Association, 65% of those who responded said that they would “some-
what” to “strongly” “recommend that consumer health informatics be
considered a separate discipline within medical informatics” (Houston,
Change, Brown, & Kukafka, 2001). To emphasize its consumer (versus
provider) orientation, consumer health informatics may benefit from a
broader label for its parent field, such as health informatics, a title pre-
ferred by some for its inclusiveness (Breslow, 1977).
Bioinformatics
Altman (2001) defines bioinformatics as “the study of how information
is represented and transmitted in biological systems, starting at the mo-
lecular level” (p. 638). Bioinformatics “uses techniques from informat-
ics, statistics, molecular biology, and high performance computing to
obtain information about genomic or protein sequence data” (Mitchell,
2004). Research using new sources of information such as the GenBank
database is “revolutionizing our understanding of human biology” (Alt-
man, 2001, p. 639), with clinical informatics and bioinformatics situated
“on a collision course as genomics data become used in patient care”
(Mitchell, 2004).
HEALTH COMMUNICATION
Health communication is a subdiscipline of human communication.
Berger and Chaffee (1987) describe the goal of human communication
science as seeking “to understand the production, processing, and effects
of symbol and signal systems by developing testable theories, containing
lawful generalizations, that explain phenomenon associated with produc-
tion, processing, and effects” (p. 17). They identify the basic phenomena
of interest as the production, processing, and effects of information or
messages. “Symbol or signal systems” can take multiple forms, including
spoken and written words, nonverbal signals, images, and even physical
objects. McQuail (1987) identifies specific acts that can occur in human
communication processing, including sending, receiving, storing, and
seeking information.
Human communication “occurs when a person responds to a
message and assigns meaning to it” (Kreps & Thornton, 1992, p. 14).
Communication can differ in its direction (one or two way) and in the
timing of responses to it (immediate or synchronous, or delayed or asyn-
chronous). Response may be direct and immediate, as with a patient’s
402 Health Communication in the New Media Landscape
response in a face-to-face two-way conversation with his or her physi-
cian about diagnosis or prognosis, or indirect and delayed, as with the
targeted population’s attitudinal and behavioral responses to a one-way
media campaign to reduce prevalence of smoking. Meaning is intended
by senders of messages (at all levels, including mass media) in their en-
coding of information and is created by the receivers of messages in their
decoding of information. “Meanings are in people. . . . They are in us,
not in messages” (Berlo, 1960, p. 175).
Witte and associates (1996) define health communication as “the
exchange, transmission, perception, and/or internalization of health-
related information, within varying social and physical environments,
regarding factors that influence health and/or health-related behav-
iors” (p. 230). This highlights health communication’s central interest in
health and health-related behaviors. Health communication is defined
by the topic of communication—health or health care—and not by its
participants, channel, level of analysis, or setting (except for organiza-
tional health communication, which by definition takes place in an orga-
nizational setting). It can take place between anyone, anywhere, via any
channel.
Risk communication is also incorporated in health communication
in that it involves phenomena that ultimately affect health (e.g., com-
municable diseases, natural disasters, environmental hazards, terrorism)
(McComas, 2006).
Levels of Analysis
Human communication can be specified at five levels of analysis: intra-
personal, interpersonal, group, organizational, and mass communica-
tion (Berger & Chaffee, 1987; Kreps & Thornton, 1992). Intrapersonal
communication “refers primarily to thinking” and is, more broadly
speaking, “concerned mainly with the seeking out, reception, interpre-
tation, and further processing of messages or signals from an environment
of objects, events, and other people” (McQuail, 1987, p. 334). Interper-
sonal communication involves the dyad of two participants; small group
communication involves three or more participants, up to a size that is
reasonable for personal communication (Berger, 1996). Interper sonal
communication—indeed any level of human communication—can
include verbal and nonverbal information and messages (Burgoon &
Hoobler, 2002). Organizational communication is defined as communi-
cation occurring within formal organizations and institutional networks
Chapter 15 Connecting Cognate Fields 403
(McQuail, 1987). Finally, mass communication occurs at a societal
level through print (e.g., newspapers, magazines, mass mailings) and
electronic (e.g., radio, television, Internet) mass media, with the main
types of content including news, entertainment, and advertising. With
the Internet, a distinction is necessary between level of communication
and level or type of channel or medium. The Internet may accurately
be labeled a mass communication channel through which different lev-
els of communication can occur (e.g., interpersonal e-mails, group or
organizational Listservs, and Web sites aimed at and available to the
mass public).
Functions of Human Communication
Although “much communication is either purposeless or an end in itself ”
(McQuail, 1987, p. 328), much communication—and certainly goal-
driven health communication—has a function or purpose for its sender
and/or receiver. McQuail offers a typology of psychological functions
that spans levels of analysis and sender and receiver.
Examples of this typology include, at the intrapersonal level, the func-
tion of communication in reducing uncertainty for receivers (McQuail,
1987). Kreps and Thornton (1992) identify two dimensions of informa-
tion or messages: the content level and the relationship level. Content
information is the “basic, tangible information being presented in the
message” (Kreps & Thornton, 1992, p. 23), and functions to reduce
uncertainty about the object of communication. Cognitive-oriented con-
tent information informs receivers about the “facts” involved. An affec-
tive function identified by McQuail (1987) is expressing attachment or
caring, which fits within Kreps and Thornton’s relationship level of com-
munication. Social functions at a group level include developing group
consciousness and expressing group identity (McQuail, 1987). Exam-
ples of functions of communication at an organizational level include
value formation and promoting solidarity, attachment, and integration
(McQuail, 1987). Functions at a societal level include relaying informa-
tion and connecting members (McQuail, 1987).
Related Disciplines
Communication is a social phenomenon, and as such, the field has been
built upon other social sciences. The field emerged as a separate disci-
pline with a strong initial focus on mass communication, including the
404 Health Communication in the New Media Landscape
effects of political propaganda and electoral campaigns (Delia, 1987; Kar,
Alcalay, & Alex, 2001). Persuasion research remains a strong tradition
within communication. The field began and remains strongly linked with
social psychology and sociology, and, in political communication, with
political science. The field has evolved to include foci at all levels of com-
munication, including the intrapersonal or information-processing level,
which has necessitated a strong link to the field of cognitive psychology.
Health communication research includes a strong focus on behavioral
effects, including their cognitive (e.g., knowledge) and affective (i.e.,
emotional and attitudinal) antecedents and the influence of social (e.g.,
norms) and even personal (e.g., personality) factors. This focus builds on
theories of social psychology to explain the behavioral effects of health
and health-related messages. Consistent with its social science roots, the
field examines communication phenomena within their sociocultural
context.
OVERLAPPING RESEARCH FOCI AND VARIABLES
Shannon’s (1949) model of communication (Figure 15.2) and Weaver’s
application of it to human communication provide a useful framework
within which to identify where and how respective research foci and
variables overlap.
Shannon (1949) describes his model as one of “engineering com-
munication” and stresses that the “semiotic aspects of communication
are irrelevant to the engineering problem” (p. 3). Weaver (1949) cau-
tions that Shannon’s use of information “must not be confused with
its ordinary usage . . . [i.e.,] with meaning” (p. 99). Engineering com-
munication involves the encoding, transmission, and decoding of infor-
mation in the form of binary digits (bits). It is concerned with what
Weaver (1949) labels the “technical” problem of technology-mediated
Figure 15.2 The Shannon model of communication.
Note. From The Mathematical Theory of Communication by Board of Trustees of the University of
Illinois. Copyright 1949, 1998. Reprinted with permission of the University of Illinois Press.
Chapter 15 Connecting Cognate Fields 405
communication: “How accurately can the symbols of communication
be transmitted” (p. 4)? This is an engineering communication question
addressed by computer science and engineering within biomedical
informatics.
Weaver (1949) asks us to “imagine . . . another box labeled ‘Semantic
Receiver’ interposed between the engineering receiver (which changes
signals to messages) and the destination” (p. 115). In this way he helps us
locate human communication (sending and receiving messages and their
meanings) as separate from engineering communication (transmitting
and receiving signals). If one views the transmitter and receiver boxes
as representing a technology, these boxes and the central portion of the
diagram between them describe engineering and computer science work
in biomedical informatics. In health communication, such technologies
represent channels for human communication.
Weaver focuses on message and on source and destination compo-
nents. Human communication research, including that within biomedi-
cal informatics, focuses on semantic meaning in messages as intended
by human sources or senders and as perceived by human destinations,
which we will label receivers—not to be confused with the engineer-
ing receiver in Shannon’s model. This exchange involves what Weaver
(1949) labels the semantic problem of communication: “How precisely
do the transmitted symbols convey the desired meaning” (p. 4)? This
question is pursued by information science in biomedical informatics
and cognitive sciences in both biomedical informatics and health com-
munication. It is a question that can also benefit from health communi-
cation research on message creation.
Weaver (1949) is also interested in the effects of communication
(the effectiveness problem): “How effectively does the received mean-
ing affect conduct in the desired way?” (pp. 4–5). Of Weaver’s three
questions, this may benefit most from interdisciplinary research with
health communication, given its application of multidimensional theo-
ries to explain behavioral effects of health-related messages.
Figure 15.3 summarizes overlapping (two middle segments) and
separate (two outer segments) research interests, or foci, based on the
selected definitions and descriptions and using Weaver’s conceptualiza-
tion of Shannon’s model for dimensions of the framework. The figure
illustrates a sociotechnical research continuum with the two fields at
opposite poles. Its aim is to illustrate relative emphases between the
fields in their overlap in human communication variables, not to argue
for bright lines of division.
406 Health Communication in the New Media Landscape
Working down Figure 15.3, the fields overlap directly in research
interests that span levels of communication and domains of biomedical
informatics, with the exception of bioinformatics, where their overlap is
clearly indirect. Bioinformatics is focused on basic biomedical research;
its findings are then applied, via routes including technological chan-
nels, in clinical, public health, and consumer health settings. Consumer
health informatics is positioned somewhat closer to the health commu-
nication pole because, as discussed below, neither restricts its research
foci in terms of senders and receivers.
In terms of type of communication, there are, of course, non-
communication aspects of biomedical informatics, such as software and
device engineering. Indeed, Musen (2002) argues that the distinguish-
ing theoretical contributions of the field lie in the areas of ontologies that
organize information and algorithms that act upon it, areas that could
be thought of as “pre-communication” endeavors. Moreover, biomedi-
cal informatics includes engineering communication, which does not
involve human communication.
However, the definitions and descriptions of biomedical informatics
also include human communication. Health communication’s overlap is in
Figure 15.3 Overlapping research foci and variables.
Chapter 15 Connecting Cognate Fields 407
this aspect of biomedical informatics. More specifically, because biomedi-
cal informatics by definition includes technology, health communication’s
direct overlap is in human communication through technological chan-
nels such as the Internet, intranets, telemedicine and telehealth, and even
telephonic applications. Health communication involves a greater rela-
tive focus on two-way synchronous interaction, whereas biomedical infor-
matics includes a greater focus on one-way asynchronous transmission
of information. In-person face-to-face communication and non-Internet-
based mass media (i.e., television, radio, and print media) are channels
unique to health communication. Nonetheless, health communication
research that includes these channels contains related research questions
that are important to biomedical informatics.
Identifying the overlap in message and source and destination is
more difficult. Even so, the definitions and descriptions of biomedi-
cal informatics narrow communication variables in these dimensions to
those that are of direct interest to it.
Health communication and biomedical research overlap in their
interest in cognitive-level “content information” (Kreps & Thornton,
1992), or messages aimed at informing and functioning to reduce uncer-
tainty in health-related decisions. This includes biomedical informat-
ics’ strong focus on knowledge. This orientation toward cognitive-level
content is clearly the case in bioinformatics (e.g., advances in biologi-
cal knowledge) and much of clinical informatics (e.g., diagnostic test
results). It is also the case with most of the information in public health
informatics (e.g., surveillance information) and much of it in consumer
health informatics (e.g., information on quality of individual hospitals in
HealthGrades.com).
The assertion that these fields overlap in cognitive-level content is
also supported in that both include cognitive sciences as component or
related disciplines. Biomedical informatics is more interested in how
such content can be organized and represented via computer technol-
ogy, while health communication is more interested in how to develop
effective cognitive-level messages. The transmission of data is deemed
of interest only to biomedical informatics because, unlike information
and knowledge, data does not include context necessary for meaning-
ful human communication. In addition, applications of biomedical
informatics to data do not always include the goal of communication.
For example, informatics is applied to genomic and proteomic data for
molecular analysis and discovery.
In addition to cognitive-level information meant to inform, health
communication is interested in affective-level information. This includes
408 Health Communication in the New Media Landscape
relationship information, as defined by Kreps and Thornton (1992),
inherent in relational communication (e.g., between physician and
patient). In addition, there is an affective dimension in persuasive com-
munication (e.g., a public health campaign), where information is aimed
at eliciting emotions and influencing attitudes toward a behavior (e.g.,
smoking). Social support may also be communicated in, for example,
online health support groups.
With the exception of consumer health informatics, the range of
senders and receivers in health communication research is broader.
Senders and receivers in clinical, public health, and bioinformatics are
determined largely by the goals and tasks of these domains and gener-
ally include health care providers, patients, public health departments,
targeted populations, and biomedical scientists. Senders and receivers
in health communication and consumer health informatics are defined
by the topic—health or health care—and not restricted to a particular
relationship or setting.
Both fields are interested in cognitive-level needs, uses, and func-
tions (e.g., for decision making and to reduce uncertainty) with health
communication additionally interested in affective-level needs, uses,
and functions (e.g., for emotional support and to express attachment or
caring). Information needs, uses, and functions in turn motivate infor-
mation seeking, a research variable of overlapping interest.
Biomedical informatics and health communication share an inter-
est in examining information processing using cognitive psychology and
other cognitive science. Health communication makes an additional
contribution in its interest in how a receiver’s affect (including mood)
influences information processing. A relevant example is the effect of a
newly diagnosed cancer patient’s fear on learning about the disease.
Consistent with other dimensions in the model, both fields share a
research interest in effects at the cognitive level, such as learning. Health
communication is additionally interested in affective-level effects such
as emotions induced by the message or information. The selected defi-
nitions and descriptions distinguish health communication in describing
and explaining effects within a multidimensional framework.
Indeed, applying multidimensional theories from social psychology
and other social sciences to explain behavioral responses to information
may represent health communication’s most valuable relative contribu-
tion in its overlap with biomedical informatics. In the selected defini-
tions and descriptions, biomedical informatics does not focus beyond
cognitive antecedents of behavior. This implicitly assumes a rationalistic
Chapter 15 Connecting Cognate Fields 409
knowledge-attitude-behavior sequence, where “knowing better” leads
to “better” behaviors, including decisions. This sequence may fit the
provider task orientation in clinical informatics, although even here the
less-than-universal adoption of clinical guidelines by physicians argues
to the contrary. In response, some scholars from fields including psy-
chology, medicine, nursing, and health communication formed an area
of study called behavioral informatics to examine associated behavior
within a broader theoretical framework (Houston, Bock, Bickmore, &
Friedman, 2005).
Given biomedical informatics’ strong focus on clinical applications,
and health communication’s roots in examining personal health behav-
iors with public health implications, health care behaviors and clinical
outcomes/processes are viewed as relatively closer to biomedical infor-
matics, and health behaviors and public health outcomes/processes are
viewed as closer to health communication.
Health services research in biomedical informatics is interested in
the effects of information technology on clinical effectiveness and eco-
nomic efficiency, at system-wide and individual organization levels.
Organizational communication scholars in health communication are
interested in communication’s role in these effects.
Focus on effectiveness and efficiencies of informatics applica-
tions—Musen’s “artifacts”—makes evaluation research important in
biomedical informatics. Health communication’s interest is in applying
sociobehavioral theory in explaining human use and response to these
applications.
Identifying Opportunities for Collaboration
An understanding of biomedical informatics’ application domains, health
communication’s levels of analysis, and Weaver’s conceptualization of
Shannon’s model provides a framework within which to identify collabora-
tive opportunities for health communication within biomedical informat-
ics. Table 15.1 shows these dimensions in a matrix, with some examples.
To elaborate on several examples, one that clearly benefits from both
the social sciences of health communication and the computing sciences
of biomedical informatics is tailored messages. Health communication
research has shown that messages that are tailored to an individual user’s
needs, preferences, and characteristics are more effectively used by the
individual than non-tailored information (Kreuter & Skinner, 2000).
Through the application of computing sciences, the needs, preferences,
COLLABORATION MATRIX WITH EXAMPLES
LEVEL OF
COMMUNICATION
SOURCES
↕
RECEIVERS CHANNELS
MESSAGE/
INFORMATION
RESEARCH
PHENOMENA/
QUESTIONS
Bioinformatics Mass
Organizational.
Group, Interpersonal
Journalists. Expert
Sources
↕
General public
Biomedical scientists
↕
Biomedical scientists
Mass media
E-mail/other elec-
tronic forums.
Face-to-Face (FTF)
Findings and implica-
tions of biomedical
research
Innovations, progress
Effect on public
opinion
Diffusion of
innovation
Clinical
Informatics
Organizational.
Group
Interpersonal
Organizational
leadership
↕
Employees. Physicians.
Other Stakeholders
Providers
↕
Patients/Other
Providers
E-mail/other elec-
tronic forums. FTF
E-mail/other elec-
tronic forums. FTF
Implementation infor-
mation. Patient care
and business function
information
Information about
patient care and treat-
ment, disease manage-
ment, behavioral change
Implementation of
clinical informat-
ics systems
Differential ef-
fects of tailored
messages
Table 15.1
4
1
0
4
1
1
Public Health
Informatics
Mass
Organizational.
Group
Public health agencies
↕
Public
Public health agencies
↕
Public health agencies/
Health care providers
Internet. Other
mass media
E-mail/other elec-
tronic forums. FTF
Disease statistics.
Environmental risks.
Emergency response.
Preventative interven-
tions. Behavioral change
campaigns
Inter-organizational
efforts
Emergency re-
sponse to natu-
ral disasters or
bioterrorism
Inter-organiza-
tional efforts
between public
health agencies
and health care
providers
Consumer
Health
Informatics
Mass
Group
Information providers
↕
Consumers
Support group
members
Internet. Other
mass media
Online forums
Health and health care
information
Personal experiences,
encouragement
Effect on
traditional doc-
tor–patient
relationship.
Health literacy
Health-related vir-
tual communities
Note: ↔ denotes two-way dialogue
412 Health Communication in the New Media Landscape
and characteristics of individual patients or consumers can be organized,
and algorithms developed, so that creation and dissemination of tailored
messages to are automated. In clinical informatics, the personal informa-
tion by which messages are tailored may someday come from the medi-
cal record. In Web-based consumer health applications, the user would
provide the personal information necessary to individualize content.
Tailored communication provides an example of where the theoreti-
cal work of biomedical informaticians and health communication schol-
ars can meet. Health communication theory can inform the content
automated by underlying ontologies and algorithms.
Through consumer health informatics applications, including Web
sites, health consumers have ready access to health and health care
information beyond that of their personal physicians. Someday this
will include electronic access for patients from home to their medical
records. These changes raise health communication research questions
about the effect of such applications on physician–patient interactions
and on the traditional physician–patient relationship. Health consum-
ers also have increasing access to provider-specific quality information.
Sources, uses, and effects of such information represent another general
area of overlapping research. At a societal level, effective use of these
new information sources depends on the collective level of health lit-
eracy, which represents an area of overlapping cognitive-level research.
Health communication research interests also overlap with those
of consumer health informatics in the study of Internet-based “virtual
communities” formed in response to shared health problems and expe-
riences. Eysenbach Powell, Englesakis, Rizo, and Stern (2004) call for
additional research on peer-to-peer health-related virtual communities,
including research on the affective outcomes of social support. Con-
sumer health informatics views the broader area of Internet-mediated
communication as a primary opportunity for interdisciplinary research,
including health communication: “Understanding how such other dis-
ciplines conceive, operationalize and investigate how consumers use
health and other sources of information on the Internet should facili-
tate the development of a coherent field, as long as common conceptual
and methodological frameworks emerge” (Bakker, Ryce, Logan, Tse, &
Hutcherson, 2005, pp. 24–25).
Before we close, some additional benefits in this collaboration should
be noted. One is methodological. Informatics technologies allow an inte-
gration of study intervention and data collection. For example, typed
responses to Web-based interventions can be captured in real time.
Chapter 15 Connecting Cognate Fields 413
Handheld technologies allow real-time responses to communication
interventions transmitted to them or to other everyday real-world phe-
nomena. The methodology of real-time data capture represents an excit-
ing new area of research (Stone, Shiffman, Atienza, & Nebeling, 2007).
These new approaches have obvious potential to improve ecological
validity in research.
Much of biomedical informatics research takes place in organiza-
tions that provide health care and public health services. As we have
already argued, this research benefits from the multidimensional and
contextual approach of health communication in analyzing human com-
munication aspects. A reciprocal benefit to health communication is
facilitated access to research data and opportunities in these patient care
and public health organizations.
SUMMARY AND IMPLICATIONS
The fields share a focus on cognitive-level information aimed at inform-
ing, including its uses and functions, and on cognitive-level effects such as
learning. Health communication contributes an additional focus on the af-
fective dimension of information and the multidimensional antecedents of
behavior. Identifying where and how foci of these fields fit together should
assist in fruitful collaboration in overlapping and related research.
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417
16
Digital and electronic media applications are dramatically changing the
way Americans do business and enjoy leisure activities. New media and
health information technology have been affecting public health and
health care more slowly than other areas but can be expected to eventually
revolutionize the nature of health service delivery in the United States.
The rapid appearance of digital technologies also brings unprecedented
challenges in all aspects of health care. Physicians and other health care
providers are faced with increasing demands for nontraditional methods
of communication and alternative modes of providing care. At the same
time, health care systems are stretching to find new ways of providing
care to patients who have limited English proficiency, poor health literacy,
and limited electronic communication access and skills (see Chapters 3
and 11). Federal and state governments will be challenged to replace
outdated health and technology regulations and systems with new laws
and policies that allow for innovation in service delivery while protecting
patients’ safety, privacy, and financial resources.
The United States is unique in that it is the only developed nation to
have maintained a health care system involving both the private and public
sectors in substantial proportions. Because of the dynamic interplay and
inconsistent integration of these two sectors, health care delivery in the
United States has been labeled a non-system. For example, a significant
New Media: A Third Force
in Health Care
KRISTOFER J . HAGGLUND, CHERYL L . SHIGAKI ,
AND JORDAN G . MCCALL
418 Health Communication in the New Media Landscape
percentage of full-time workers and the majority of part-time workers are
not offered health insurance and also are not eligible for a social insurance
program (e.g., Medicaid). As another example, many health systems are
now using electronic health records, but these systems are developed by
different vendors and are often incompatible with each other. The conse-
quence is that patients’ electronic health records are often only useful if
the patient remains in one health care system.
The negative consequences of the U.S. health care non-system
include the fact that a high proportion of the population lacks health
insurance or is underinsured, as well as accelerating overall health care
costs and health care service quality that varies significantly by payment
system and geographical region. The positive outcomes of this structure
include a well-respected health professions training system, major inno-
vations in health care treatments, and rapid diagnostic and treatment
technologic development.
Although the public and private sectors are the two major forces that
have historically driven the U.S. health care system, the new media are
rising as a third force. Digital and electronic media are rapidly and dra-
matically changing how people access and utilize information, including
information about health and health care. Emerging trends at the inter-
face of digital and electronic media applications and health care delivery
include:
Multiple formats for obtaining information. Information in tradi-
tional formats (e.g., newspapers, television) are already being aug-
mented or replaced by Web sites, e-mail, and podcasting.
Immediacy of information. The digital and electronic media pro-
vide immediate information. In addition, consumers control the
extent and timing of the information obtained.
Customized programming. Consumers are able to use digital and
electronic media to control the topic, source, and format of the
information in the way they most prefer to receive it.
Exponential increases in sources. The number of digital media
sources about health and health care is expanding. These sources
vary dramatically in their accuracy (a concern for many health
care professionals).
It is difficult to foresee the full extent to which the digital and elec-
tronic media will affect health care providers, patients, government pro-
grams, and the economy. Whether national policy will guide or react to
■
■
■
■
Chapter 16 New Media: A Third Force in Health Care 419
these changes remains a significant question. Market forces are both
powerful and nimble, but policy has historically mirrored or followed
societal change.
This chapter will review four major health policy issues and how
they are being affected by digital and electronic media: health care
access, health care quality, health literacy, and the aging of America. The
chapter will discuss how health policy might respond as the business of
health care struggles to assimilate new modes of communications and
service delivery.
ACCESS TO HEALTH CARE
The most pressing bipartisan concern in health care today is the stagger-
ing number of individuals who are unable to afford needed health care
services. Approximately 48 million Americans have no health insurance,
and millions more are underinsured. Debates on how to reduce these
numbers have persisted for decades. The American public has rated ac-
cess to health care as a high priority in polls over the years (NPR/Kaiser
Family Foundation /Harvard Kennedy School of Government, 2002),
but no consensus has been reached on how to address this challenge. In
addition, many of the 59 million Americans living in rural and frontier
areas experience geographic burdens and barriers to receiving timely,
high-quality care (U.S. Census Bureau, 2000a).
Additionally, more than half (56%) of all U.S. farm workers perform
migrant work that requires them to travel or relocate more than 75 miles
each year (U.S. Department of Labor, 2000). A large-scale overhaul
of the U.S. health care system to guarantee health care access to all
Americans remains unlikely. Incremental changes, such as tax credit ap-
proaches, may reduce the number of people who lack insurance some-
what but will still leave millions without access to appropriate, affordable
health care (Fuchs & Emanuel, 2005).
If digital and electronic media technologies become a first-line
source of health information, they will ease the challenges facing the
uninsured and/or others who experience difficulty accessing health care
services. Telehealth, for example, has demonstrated success in crossing
geographic barriers to health care. Digital and electronic media may
involve Web interfaces (e.g., WebMD) that allow consumers to find and
interact with information about common, uncomplicated, and easily
treated medical conditions (e.g., sore throats, colds).
420 Health Communication in the New Media Landscape
Interactive Health Information Applications
Widespread adoption of digital interfaces will help facilitate safe and
effective self-care management because of the ease of incorporating
multiple communication modes and links. Information may translate
into different languages, include audio and visual features to facilitate
understanding, and direct patients to available in-person resources. It
is possible that health care kiosks with interactive media will be avail-
able in public places, including schools, public libraries, pharmacies,
and shopping centers, providing consumer-patients with access to health
information, diagnoses, and treatments. City, county, and state health
departments may use such interactive media to promote services such
as influenza immunizations and other vaccines, sexual health services,
and healthy life promotion. This type of health information and treat-
ment station might come in a variety of formats and function much in
the way that ATMs are available for banking services. Digital and elec-
tronic media will not provide what is traditionally considered health care
or have a significant impact on the barriers to care for the uninsured.
It will, however, provide cost-effective basic health and health care re-
sources to those who have little access to such information.
Despite the promises of innovation, however, there is an incompat-
ibility between the goals of market-based digital and electronic media
products and the health needs of many consumer-patients, especially
vulnerable populations and those living in rural areas. Digital and elec-
tronic media products are quickly being adopted and even demanded
by consumers accustomed to instant information and entertainment,
novelty, and stimulation. New product development is notoriously
driven by high-end users, with emphasis on multiple formats, graph-
ics, and ever-increasing speed (e.g., Stamm, 2004). Attention must be
refocused on inclusion and “universal design” to meet the needs of
those with low literacy, low incomes, and inability to access broadband
networks.
Improved access is needed for those living in rural and frontier areas
and those living in dense and impoverished urban areas. Much of the
digital and electronic media has yet to reach these vulnerable popula-
tions because of the cost of needed devices (personal computers, MP3
players, high-end cellular telephones, etc.) and because broadband con-
nections are unavailable. Most rural areas in the United States use dial-
up Internet services that have such limited bandwidth that most audio
and video/animation applications cannot be accessed.
Chapter 16 New Media: A Third Force in Health Care 421
A call for government-supported broadband expansion is gathering
interest. Atkinson (2007) argues that the intervention of the federal gov-
ernment for widespread access to broadband is similar to that of the
Rural Electric Administration of the 1930s. This government program
brought electricity to nearly all Americans despite arguments against
such expansion. Atkinson argues that universal broadband is too impor-
tant to leave to market forces. Its positive applications to health and
health care support his argument. For example, universal access would
allow for a significant increase in telehealth services. In addition, insur-
ers, health care providers, and health care systems would have dramati-
cally improved ability to reach consumers and patients, and vice versa.
Public Telehealth
Telehealth care grew dramatically in the 1990s (Brear, 2006). In its best
form, telehealth allows health providers to deliver care in synchronous
audio/visual formats to patients who are geographically isolated or are
unable to travel to the providers’ health care institutions. The larger tele-
health umbrella also includes low-technology modes, such as individual
telephone contacts, teleconferencing among multiple providers/con-
sumers, and asynchronously transmitted health information (e.g., radio-
logical images). Telehealth is particularly useful for allowing providers
and patients to access specialists who practice only in larger urban areas
and academic health centers. In addition, continuing medical education and
other health care related education, research, and business are often
conducted via telehealth networks.
Telehealth is most often used by patient–provider dyads. As such,
it provides a remarkable opportunity to increase patients’ reach to ser-
vices. In this private format, however, telehealth fails to maximize its
technological potential. Public applications, where a provider interacts
with multiple individuals, could greatly expand access to critical informa-
tion among patients and facilitate public health initiatives by improving
access to preventive health information. For example, a diabetes health
team from an academic health center could work with local libraries or
senior centers to provide education about nutrition, exercise, blood glu-
cose testing, and weight management. Public telehealth could be ex tended
to such interventions as group motivational enhancement therapy to
improve adherence to treatment regimens and health promotion, or to
promote basic services such as community information about immuniza-
tions. Telehealth will be extremely valuable in facilitating communication
422 Health Communication in the New Media Landscape
and the provision of vital information in the event of a natural disaster or
an infectious pandemic. In such cases, rapid and accurate communica-
tion among governmental agencies and health care providers is critical to
the protection of the health of the public.
Prior to substantial expansion of telehealth, whether it is being used
in provider–patient dyads or public format, several legal-regulatory
issues need to be addressed. Specifically, the provision of health care
across state lines via telehealth is a violation of professional practice acts
for most states (Rogers, 2006; Stanberry, 2006). In recent years, there
has been substantial legislative action at the state level aimed at over-
coming licensure barriers to care based on jurisdiction (U.S. Depart-
ment of Health and Human Services, 2003). Other barriers must also be
addressed, including the legal liability of health care providers/educa-
tors working remotely (Akalu, Rossos, & Chan, 2006; Stanberry, 2006)
and duties of maintaining privacy and confidentiality (Stanberry, 2006).
The duty to maintain patients’ privacy is complicated by remote care,
or education provided in a group format where individuals may not be
acknowledged but are listening and/or watching the participants.
Providers and policy makers will need to address the standard of care
for group telehealth. As Akalu and associates (2006) point out, there are
tradeoffs associated with telehealth services. Health care and health edu-
cation provided remotely to individuals and groups are unlikely to be as
powerful as face-to-face encounters. But without telehealth access, health
care and education may not be provided at all. Legislative and regulatory
changes are being undertaken but are unlikely to keep pace with the tech-
nologic opportunities to expand access to health care and education.
Additionally, while Medicare has established telehealth reimburse-
ment schedules, many Medicaid programs have not fully embraced
reimbursement for health care services provided via telehealth, despite
evidence that it is cost efficient (Gray, Stamm, Toevs, Reischl, & Yar-
rington, 2006). Most providers would be unwilling to offer continuing
services without means for adequate reimbursement. For public tele-
health, issues of privacy stemming from HIPAA provisions may have to
be addressed if multiple telehealth sites are linked at one time. These
and other policy issues are likely to have a negative impact on progress in
developing adequate nationwide telehealth infrastructure.
Protecting Privacy
The opportunities for digital and electronic media applications to expand
access to health care come with additional liabilities. Many of these have
Chapter 16 New Media: A Third Force in Health Care 423
been noted above, but protecting privacy in health is essential. Effective
privacy protections have been obtained in other sectors of the economy,
however, including banking. The establishment of universal health cards
with PINs to allow patient-consumers to participate in a variety of digi-
tal and electronic media health care services and maintain their privacy
is feasible. Current laws may not be sufficient to allow for this type of
sweeping change, however, and may need to be changed.
Insurance-Based Digital and Electronic Media
Employer-sponsored health insurance provides health care coverage
for approximately half of the nation’s citizens (DeNavas-Walt, Proctor,
& Smith, 2007). Employers and their insurance providers are realizing
the value of digital and electronic media tools to promote and maintain
the health of employees. Nearly all major health insurance companies
provide electronic access to benefit summaries, claims histories, pro-
vider networks, and other basic information. Many are also using digital
and electronic media tools, including e-mail and Web site downloads, to
offer additional services such as health promotion programs (e.g., smok-
ing cessation, exercise guidelines, health screening reminders). E-mail
approaches appear to be successful, at least to the point that employ-
ees open health promotional e-mails (Franklin, Rosenbaum, Carey, &
Roizen, 2006). Insurance companies are providing information to health
care providers about evidence-based practices, available treatment re-
sources, common claims submission errors, and the like (Business Wire,
2007). Similar actions are occurring at the state level with the introduc-
tion of electronic health monitoring by patient–provider partnerships.
In at least one state, providers are being compensated through Medicaid
for the ongoing electronic communication with patients of chronic dis-
eases (Missouri Department of Social Services, 2007).
More controversially, health insurers may use digital and electronic
media and/or health information technology to track the health of those
they insure, and to intervene to prevent future problems and/or promote
health. As of April 2008, Japan requires its health insurers to maintain
annual checkups on their beneficiaries (Okomato, 2007). While they
are intended to combat chronic disease states, such actions potentially
violate beneficiaries’ freedom to choose their own behaviors. For exam-
ple, beneficiaries who choose to smoke or overeat may perceive their
individual rights and privacy are being violated if these behaviors are
monitored. Outcomes from this reform will certainly play a role in the
global approach to chronic disease management.
424 Health Communication in the New Media Landscape
HEALTH CARE QUALITY
Improving health care quality has been an elusive goal for the U.S. health
care system. The largest barrier to improved quality is the complexity of
the health care system, especially the discontinuities in financing, pay-
ment, and delivery systems created by a dual private-public system. The
Institute of Medicine’s seminal report To Err Is Human (2000) noted
that health care errors cause approximately 98,000 deaths each year.
The Institute of Medicine’s later report, Crossing the Quality Chasm
(2001), emphasized the importance of inter-organizational cooperation
and health system redesign to improve the quality of care. The six goals
articulated in this report include making the health care system safe, ef-
fective, patient-centered, timely, efficient, and equitable. To obtain these
goals, the Institute of Medicine recommended a redesign of health care
processes that would be augmented by digital applications. For example,
the Institute of Medicine recommended that the patient be seen as “the
source of control” and that patients should have “unfettered access to
their own medical information and to clinical knowledge.”
Consumer-Patient Access to Electronic Health Records
Already, consumer-patients are using digital and electronic media ap-
plications, including health-oriented Web sites, blogs, and podcasts
to gather information about their health in general and about poten-
tial diagnoses and treatments for symptoms in particular. They are also
using digital and electronic media to maintain their own health care
history. The health care industry has yet to fully embrace the Institute
of Medicine’s quality recommendations and the digital and electronic
media applications that would facilitate the achievement of these rec-
ommendations. It is likely that the consumer-patient demand for digital
and electronic media will drive changes among health care systems and
providers. Consumer-patients are already demanding increased conve-
nience, information, and transparency around health service transaction.
Digital and electronic media will be needed to meet these demands.
Adoption of universal electronic health records would profoundly
reduce the number of health care errors by improving diagnostic accu-
racy, reducing unnecessary repetition of lab and other diagnostic tests,
reducing administration of contraindicated medications and interven-
tions, and increasing individualized treatments (Kizer, 2007; Menachemi
& Brooks, 2006). Electronic health records will be enhanced in that they
Chapter 16 New Media: A Third Force in Health Care 425
will allow consumer–patients access to their health records, as recom-
mended by the Institute of Medicine. In addition, using digital and elec-
tronic media applications, consumers should be allowed to add to their
health records in an unrestricted section of the records. Patient- consumers
can provide background context and additional information that has not
been recorded and point out perceived errors in their records.
Pay for Performance and Digital and Electronic Media
Pay for performance (P4P, as it is commonly known) is another promis-
ing approach to improving health care quality. P4P replaces the usual
quantity-based reimbursement protocols with reimbursement based
on quality of care. Health care systems and individual providers are re-
warded for adhering to quality processes and/or success in improving the
health of their patients. P4P is hypothesized to reduce the substantial
practice variations in utilization of services that are not supported by
evidence (Weinstein, Bronner, Morgan, & Wennberg, 2004; Wennberg,
O’Connor, Collins, & Weinstein, 2007).
P4P initiatives are still in their infancy, and critical issues still need to
be resolved before they are widely adopted. Among these issues are spe-
cific reimbursement models (e.g., penalty versus reward for improving
quality) and whether “process” outcome measures (e.g., adopting health
information technology) versus health outcome measures (e.g., infection
rates) will be accepted (Kuhmerker & Hartman, 2007). Nevertheless,
P4P initiatives are using new health information technology such as elec-
tronic health records and digital and electronic media applications, like
Web-based health information and e-mail. Under these circumstances,
patient-consumer interaction may not only help improve quality initia-
tives but also provide measures of outcome such as satisfaction with
services through digital and electronic media applications.
Digital and Electronic Media and Quality Transparency
Unlike most product markets, information on the skill and expertise of
the provider, quality of the health service, and indicators of value are
essentially hidden from consumer-patients. A modest amount of infor-
mation about hospital quality is being provided to consumers, but this is
only marginally helpful for most consumers. For example, the Leapfrog
Group (www.leapfroggroup.org) provides a Web-based ratings system
for hospitals across the country. But hospital participation is voluntary,
www.leapfroggroup.org
426 Health Communication in the New Media Landscape
and the ratings are restricted to a few key areas, such as use of comput-
erized physician order entry and performance ratings of high-risk treat-
ments. The Leapfrog Group emphasizes using both purchasing power
and public information about quality as leverage to force providers to
improve quality. This innovative example of a market-based approach
using digital and electronic media applications to improve health care
quality holds promise.
Other private-public partnerships are using Web-based applications
to enhance consumer-patient awareness of the quality of providers. For
example, Hospital Compare (www.hospitalcompare.hhs.gov) provides
quality evaluations to consumers about the performance of local hospi-
tals for the treatment of adults. This Web tool was created through the
collaboration of the Centers for Medicare and Medicaid Services and
the Hospital Quality Alliance: Improving Care Through Information.
Physician ratings are much more controversial, and there is, as yet,
no agreed-upon method to rate physicians’ quality of service provision
or value. Initiatives to rate physicians by insurance companies, private
companies, and even a few states have begun to be introduced but are
opposed by most physicians and physician organizations. Neverthe-
less, digital and electronic media applications and patient-consumer
demand for information about quality will continue to grow, making
physician and other health provider ratings a likely future product for
patient-consumers.
Will patient-consumers take rating health provider quality and ser-
vice into their own hands? The Web-based Angie’s List (www.angieslist.
com) provides ratings of quality and service for contractors of all types.
Consumers join for a relatively nominal fee and are able to review the
aggregated ratings from other consumers before choosing a contractor
to provide a service. Might Angie’s List or another consumer-oriented
company (e.g., Consumers’ Union) begin to use digital and electronic
media applications to collect consumer-patient ratings of physicians and
make the data public?
Digital and electronic media applications will reshape health care
quality issues in the United States. Already consumer-patients are
obtaining information from the Web and other digital and electronic
media sources about their health care concerns prior to interacting with
their health care providers. It is yet unknown how this will change the
relationships between patients and their providers. Clearly, the exis-
tence of more informed patients will move health care further away
from a paternalistic model of care to a contractual model, where the
www.hospitalcompare.hhs.gov
www.angieslist.com
www.angieslist.com
Chapter 16 New Media: A Third Force in Health Care 427
patient has more control over health care decisions. Many health care
providers and health care policy makers lament that patient-consumers
are not taking adequate responsibility for their health. Undoubtedly,
digital and electronic media applications are starting to change patient-
consumers’ approaches to health and health care. With appropriate
nurturing, digital and electronic media applications will become a criti-
cal tool for providers and patients alike. Consumer-oriented patients
appear to be enthusiastic users of digital and electronic media to aug-
ment their efforts to stay healthy and to effectively interact with health
care providers. In contrast, other than initial health information initia-
tives by health insurers and health systems, providers have not appeared
to have the same enthusiasm as consumers for digital and electronic
media applications. Their hesitancy may stem, in part, from the failure
of policy, regulations, and reimbursement to maintain pace with digi-
tal and electronic media application development and adoption. It may
also stem, in part, from training in providing care in more traditional
formats that do not teach new providers how to effectively use digital
and electronic media to enhance their patients’ welfare.
The challenges of getting valid and reliable information to patient-
consumers are substantial, however. How do consumers know that the
information about illnesses and treatments are accurate? Are federal and
state governments the arbiters of health and health care information, or
will a laissez-faire approach be effective? Is it possible for the market-
place to sort out the useful and accurate information versus inaccurate
and potentially dangerous information? The stakes are high in this area;
even seemingly modest misinformation can have dangerous and poten-
tially lethal affects on individuals. Of course, those most at risk for
accepting and using inaccurate information are also those who are least
likely to have good health care access (e.g., populations with low income
or low health literacy) (Institute of Medicine, 2004).
HEALTH LITERACY
Low literacy may pose the largest barrier to the effective delivery of
care to our nation’s citizens. Health literacy—the “degree to which indi-
viduals have the capacity to obtain, process, and understand basic health
information and services needed to make appropriate health decisions”
(U.S. Department of Health and Human Services, 2000)—has been rec-
ognized as a serious barrier to high-quality care in the United States
428 Health Communication in the New Media Landscape
today. The lack of ability to understand information about health and to
use this information to make choices and change behavior (properly tak-
ing medicine, avoiding certain foods or activities, etc.) has drastic effects
on the health of the U.S. population. Patients with limited health lit-
eracy have higher rates of hospitalizations, know less about their disease
management, and are more likely to be in general poor health (Baker,
Gazmararian, Sudano, Patterson, Parker, & Williams, 2002; Nath, 2007;
Paasche-Orlow & Wolf, 2007). Providers continuously face health
literacy issues without being able to identify or correct them (Bass,
Wilson, Griffith, & Barnett, 2002). From an economic standpoint, pa-
tients with limited health literacy cost the government nearly four times
as much as their peers with higher health literacy levels (Weiss & Palmer,
2004). In addition, the total burden on health care resources presented by
low health literacy may be between $29 and $69 billion (Friedland, 1998).
Traditional tools are being used to combat health illiteracy. Most of
them, however, rely on provider training or printed materials. Digital and
electronic media applications provide an expanded set of useful tools.
Access to regulated Web sites such as MedlinePlus.gov gives patients
streams of information that can help people become more health liter-
ate. Unfortunately, many Web sites that present health information are
not regulated by experts; nor are the Web sites in language suitable for
those with limited health literacy (Greenberg, D’Andrea, & Lorence,
2004). Other health promotion outlets are offering materials in a vari-
ety of media, including Web sites, printable documents, MP3 audio les-
sons, online video, and portable video capability, such as iPods and cell
phones (Cassey, 2007). Although these tools serve a great need for the
technologically inclined, they present yet another barrier for those who
are not.
Indeed, the digital divide, as it has come to be known, is a critical
issue for people who are not technologically savvy or have few resources
to purchase or use needed digital and electronic media devices. Such a
cultural division produces a barrier to digital and electronic media but can
also serve to further isolate other vulnerable populations, such as those
with limited health literacy, the elderly, and those from rural communi-
ties and different cultural backgrounds, from the innovative and infor-
mative digital and electronic media applications. For example, elderly
individuals with limited literacy skills have a more difficult time learning
how to use a keyboard, mouse, and the Internet (Pevzner, Kaufmann,
Hilliman, Shea, Weinstock, & Starren, 2005). These setbacks serve to
widen the digital divide and will require extra attention as digital and
Chapter 16 New Media: A Third Force in Health Care 429
electronic media are developed to address health concerns of the elderly.
Broadband availability is a critical issue in rural areas. Many rural areas do
not have access to broadband internet capabilities (Horrigan & Murray,
2006). In these communities computer use is markedly different from
that in urban areas. The technology is more likely to be used for edu-
cational purposes (Horrigan & Murray, 2006). This inclination toward
furthering knowledge could play a powerful role in reducing health lit-
eracy if greater broadband coverage were to be achieved. Cultural barri-
ers are also present when Web sites and other digital media use only the
English language and American customs (Chagrani & Gany, 2005). To
reach a wider audience, health information points of access will have to
be adjusted to fit the growing immigrant populations.
AGING OF AMERICANS AND DIGITAL
AND ELECTRONIC MEDIA
Among digital and electronic media–based health and wellness resource
users, older adults comprise a subpopulation with a distinct and unprece-
dented role in the shaping of policy. Foremost, older adults are the fastest-
growing demographic group nationwide and worldwide. Although adults
over 65 accounted for 12% of the U.S. population in 2000, this figure
is expected to surge to 21% by 2030 (U.S. Census Bureau, 2000b). An
increase of this magnitude will have dramatic consequences for public
health, health care financing and delivery systems, and caregiving sys-
tems (“Public Health and Aging,” 2003).
Unique among this cohort is the overwhelming degree to which
health care costs are subsidized by government-based programs (Medi-
care and Medicaid). Older adults have the highest rates of use of inpa-
tient and chronic health care services and incur the highest per capita
health care costs (Desmond, Rice, Cubanski, & Neuman, 2007; Thorpe
& Howard, 2006). Older adults are disproportionately represented in
rural areas, where basic and specialty health care services are notori-
ously sparse (Haugh, 2005; U.S.Department of Agriculture, 2000).
Given these factors, older Americans are poised to become the nation’s
largest group of technology-dependent health service users.
Only one-third of seniors currently over 70 are actively “wired.”
Nevertheless, many may be “passive” Internet health care users; that is,
younger family members may be visiting Internet sites on their behalf.
In contrast, over 50% of seniors in their 60s are active Internet users
430 Health Communication in the New Media Landscape
(Fox, 2006). As America’s technologically savvy baby boomers reach
retirement age, the demographics of Internet utilization will become
less disparate (Fox, 2006). In emerging health care applications, how-
ever, the new media have implications far more widespread than simple
online consumer activity. Services and technologies such as monitors or
other devices that record information on an individual’s chronic condi-
tion (e.g., diabetes, heart disease) and relay information across a broad-
band network also fall under the umbrella of new media. In a study of
telehealth-based case management, seniors with diabetes who were pro-
vided with in-home videoconferencing equipment and trained to use it
demonstrated improved hemoglobin A1C, blood pressure, and choles-
terol levels (Shea et al., 2006).
Cost savings and quality improvement are major driving forces in
the development of health policy. These factors also will have an impact
on the prevalence and use of digital and electronic media in health care.
A 2005 report prepared for the New Millennium Research Council pro-
jected that accelerated national broadband deployment could lead to
very significant cost savings among older adults and individuals with dis-
abilities, the populations most likely to use monitoring devices for chronic
conditions (Litan, 2005). The report projects that savings occurring
through lower medical costs, lower costs of institutionalized living, and
additional output generated by more seniors and people with disabilities
in the labor force could potentially exceed the equivalent of half of U.S.
annual spending for medical care for all its citizens. (Litan, 2005).
Importantly, Internet marketing has increased its focus on senior
consumers. Health-related businesses such as online pharmaceuticals,
supplements, health care information, insurers, and homecare services
market directly to older consumers. These sites frequently contain links
and information on chronic health conditions that can be personalized
with entry of personal health data. Senior-oriented special-interest orga-
nizations are providing a full array of informational services via Internet
communications (e.g. AARP, the Senior Coalition). Digital and elec-
tronic media–based products for self-care are proliferating. For exam-
ple, the Web site of the American Diabetes Association (2008) journal
Diabetes Forecast includes the 2008 annual resource guide that provides
information on 12 software packages that work in conjunction with blood
glucose meters to accept and analyze data.
Technology vendors worldwide are becoming increasingly attentive
to the needs of senior users and to the economic potential of this market
base. As early as 1999, Microsoft reported on the company’s initiative to
Chapter 16 New Media: A Third Force in Health Care 431
issue guidelines for making Web sites user friendly for seniors (Micro-
soft, 1999). Microsoft also has commissioned a research report on its
product accessibility and use of accessible technology (Microsoft, 2004).
Key findings revealed that the majority (57%) of computer users are
either likely or very likely to benefit from the use of accessible technol-
ogy, and that significant growth in numbers of technology users should
be anticipated because of the increase in the number of individuals over
65. While awareness of the availability of accessible technology was high
among respondents, it was determined that significant development
opportunities exist in making accessibility options easier to discover.
The predominant mobile phone operator in Japan, NTT DoCoMo
(2006) has introduced multiple digital and electronic media–based prod-
ucts with health applications for older adults, including a cell phone that
slows speech to increase comprehensibility without increasing overall
communication time. This company has primarily targeted elderly users
with hearing loss (AARP, 2005). The company markets a videophone
for bedridden elderly individuals and distant caregivers with multiple
accessibility and emergency features, as well as the Wellness mobile
phone, which is advertised as a hassle-free way of keeping track of their
health. The product comes with a motion sensor that detects body
movements and calculates calories burned and tracks jogging targets.
New and developing features of the phone include a body fat calculator,
pulse monitor, bad breath monitor, and caloric intake monitor (Tabuchi,
2007).
Britain-based Vodafone currently markets a minimalist cell phone
with larger and fewer buttons and features to older adults, and U.S.-
based Safe Guardian markets a one-button cell phone that connects the
user to an operator who can contact family, provide directory assistance,
or dispatch emergency personnel (AARP, 2005). Siemens is currently
preparing to market a multipurpose phone device that can be used as
a mobile alarm, a fitness trainer, and an emergency call system for the
elderly and disabled. Sensors register sound, temperature, and move-
ment and can be used anywhere in the world. The system can notify
caregivers if an elderly person has fallen or is motionless. People with
special needs can use the display as an emergency call button to sum-
mon rapid assistance (Gizmag.com, 2007). Finally, VeriChip Corpora-
tion is test-marketing an implantable microchip for individuals with
Alzheimer’s disease that would allow medical personnel to access infor-
mation and medical records quickly in an emergency situation (Business
Wire, 2007).
432 Health Communication in the New Media Landscape
THE NEW MEDIA AS THE THIRD FORCE IN HEALTH CARE
Will the new media become a powerful third force in the U.S. health
care system? The early evidence suggests that consumer-patients are
already turning to digital and electronic media applications for informa-
tion about health and health care. Web sites such as WebMD have health
news, interactive features (e.g., determining body mass index, symptom-
based diagnosis suggestions), and communication features such as blogs
and message boards. These Web sites have proven track records and are
commercial successes. Consumer-patients are also ordering pharmaceu-
ticals through Web-based companies, finding information about benefits
from their health insurance companies, and using Web sites to find in-
formation about health care facilities’ quality ratings. Consumer-patients
are increasingly taking information found through digital and electronic
media applications to their appointments and corresponding with their
health care providers by electronic mail.
Digital and electronic media have the potential to greatly expand
access to health services, especially for those who have been tradition-
ally underserved. Substantial investments in infrastructure are needed
if digital and electronic media will be accessible to vulnerable popula-
tions, such as the elderly, those living in rural areas, and those without
easy access to digital and electronic media services. The investments
that appear to be needed include universal broadband Internet access, a
wireless or cellular infrastructure that could connect and support remote
geographic areas, and increased attention to computer training through
public programs. Ambitious universal wireless projects, however, have
so far been met with both economical and technical challenges (Associ-
ated Press, 2007). These setbacks all but ensure that widespread munici-
pal wireless access is far from being a reality, with rural prospects even
further down the road.
How will health care quality be affected by digital and electronic
media? Consumers may use Web sites such as Angie’s List to rate their
health care providers on service and quality. College students are using
such applications to grade their professors. Can health care providers be
far removed from this type of consumer-based evaluation? What is not
known is how providers will respond. Health care systems are begin-
ning to pay attention to their public evaluations and making changes to
their practices. If experience from other markets is an indication, health
systems and providers who are able to embrace digital and electronic
media applications to reach their consumer-patients will find that their
Chapter 16 New Media: A Third Force in Health Care 433
consumers respond positively. Health systems and providers who are
willing to accept digital and electronic media applications are likely to
find improvements in patient satisfaction, market share increases, and
perhaps enhanced health among patients.
Digital and electronic media applications will improve the nation’s
health literacy because they can be used to move away from text-only
information to audio and visual information and interactive services.
Digital and electronic media applications also provide a means to trans-
late and disseminate health and health care information into multiple
languages. Telehealth interpretation services that facilitate communi-
cation between providers and patients who speak different languages
are growing quickly. These services allow health care facilities to enable
interpretation without employing multiple interpreters.
The digital and electronic media have begun to change how health
care interacts with aging Americans. Telehealth and remote monitor-
ing allow elderly patients to remain in their homes and communities
and have frequent interaction with their health care providers. Substan-
tial improvements in infrastructure are needed to increase penetration
of digital and electronic media applications to the aging populations,
including a universal broadband network and “universally designed”
consumer products (larger numbers, volume assists). Given that elderly
Americans account for the use of the majority of health care services in
this country, thoughtful application of digital and electronic media in
health care systems for this population will reduce costs, improve health,
and increase independence.
The digital and electronic media have already dramatically changed
the way Americans conduct business and enjoy leisure. It will soon trans-
form the U.S. health care system.
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437
17
This volume brings together researchers from a wide variety of back-
grounds to consider the question of how the digital revolution is affect-
ing and will continue to affect health and health care in the United States
and around the globe. By “digital revolution,” we mean all the new ways
that computers and a vast array of digitally-based electronic devices pro-
vide ways for people to experience content.
The Internet, of course, is the centerpiece of the digital revolution
because it brings together the features of television, radio, telephone,
and print media. It has also changed the meaning of “mass communi-
cation” because although the masses use the Internet, they can use it
for interpersonal communication (i.e., from one individual to another),
as well as for mass communication. In fact, the “mass communicating”
can occur in a way that is customized to individuals, which of course the
legacy media do not allow. The Internet also allows people to interact
both with the source of the mass message and with each other. The
“one-to-many” model of mass communication has been profoundly
disrupted.
Because it is so inexpensive to create and send messages using digi-
tal media, it has democratized communication in terms of who may be
a source of communication. It is no longer just those with deep pock-
ets (e.g., government, corporations, politicians, policy makers) who can
Health Communication in
the New Media Landscape:
A Summary
ESTHER THORSON AND MARGARET E . DUFFY
438 Health Communication in the New Media Landscape
send messages now that anyone with a computer, e-mail capacity, or the
ability to create a Web site can reach thousands of people.
Of course, the digital revolution has also meant the emergence of
many communication devices, including wireless phones, PDAs, digital
still and video cameras, laptops, and pagers. The proliferation of these
devices and constantly falling prices, miniaturization, and increases in
speed and capacity have revolutionized how people communicate with
each other, get information, are entertained, and acquire goods and
products.
It is clear that the digital revolution is changing—and will continue
to change—just about every aspect of human behavior. This volume has
focused on how it changes health and health care. The chapters have
looked at the impact of telehealth, e-mail, individual health care records,
health and clinical informatics, cell phone health information delivery,
Web sites, chat groups, social networks and many other products of the
digital revolution. With each of these products we see huge possibilities
for change in health and health care. Greater message impact, special-
ization to individuals, increased message efficacy, more social support,
and the potential to promote healthy behaviors and growth in health
literacy are all outcomes that we can expect from the digital revolution.
Our challenge is to use the tools technology is offering to accomplish
health outcome goals.
A central assumption is that health communication can become far
more effective in the digital world than it is now. It is also assumed that
health communication is a crucial process in relating all elements in the
health and health care world. In a simplified way, Figure 17.1 represents
the units in that world. At the center is health. Chapter 1 defined health
as “a state of complete physical, mental, and social well-being, not merely
the absence of disease or infirmity.” Intervening between health and
non-health conditions (both acute and chronic) is prevention. Notice
that for both prevention and acute and chronic non-health, there are five
variables to consider: access to health care, quality of health care, social
support, health literacy, and self-care. These can all be thought of as
interventions that either keep people healthy or return them to health.
Surrounding this central core of health and non-health are the vec-
tors that influence the movement between health and non-health. First,
there are health policies. These emerge from two sources: private enter-
prise (hospitals, pharmaceutical companies, and insurance corporations)
and public organizations, primarily government and government agen-
cies, but also nonprofit organizations.
Chapter 17 Health Communication in the New Media Landscape 439
Health care advocates have specific perspectives on the prevention/
intervention processes and act mostly on private and public policy sec-
tors. However, they often attempt to act on individual citizens, who
are located in the central health/nonhealth circle.
On the right side of the figure is basic research (which can come
from academic or corporate sources); bioinformatics, which is defined
as the management of complex data sets that represent the outcomes of
research of various types; and best practices, which is the collection of
information on how best to execute all acts of providing health care, for-
mulating policies, informing the public, and managing the flow of infor-
mation in the system. At the top of the figure are providers — doctors,
Figure 17.1 Health care providers
440 Health Communication in the New Media Landscape
nurses, therapists, insurers, and all others who are involved in delivering
health care directly to citizens.
The pattern of information flow is the key aspect of the health sys-
tem represented. This information flow is best visualized in terms of a
number of elemental stages. When information needs to be moved from
one component of the system to another, the first stage is encoding. This
involves representing the information so that it is expressed in a mes-
sage. For example, if the information is about a best practice, it needs to
be described in a way that is understandable to its target audience. Here
is an example of such a message: “It is best to put babies in their cribs
on their backs because this is the best way to avoid crib deaths.” That
message can be transmitted interpersonally (by a medical professional
to a patient) or in brochures, in 30-second television videos, or as online
learning modules for nurses. Any message is delivered through some
sort of channel, whether it is speech, cell phones, laptops, television, or
social networking sites.
When the messages are received (if indeed they are received), sev-
eral more important processes have to occur. The receiver must decode
the message and make decisions about what, if any, action he or she
should take based on the complexity of the message. For example, when
the baby has a cold, should she be placed on her back? Is this true just for
newborns or for 12 month-olds too? In some situations, more advanced
“re-analyses” are needed. Another key vector involves the strategy for
disseminating statistics and data sets from bioinformatics sources. These
are key data that help us understand how statistics and other mediating
information help health information specialists arrive at beliefs about
practices.
A critical point is that communication among all elements of the sys-
tem represented here is complex and fraught with chances for miscom-
munication. In fact, we want to make it clear that much communication
is “translation,” from idea to encoding and from message through the
decoding process. This translation is in and of itself a science—the sci-
ence of health communication.
Chapter 5 offers the media choice model as a useful framework for
thinking strategically about how messages should be formed and tar-
geted toward audience needs. It further shows how communicators can
send appropriate messages through the best channels at the best time to
reach targeted audiences. As represented in the model, where there is a
double arrow, the media choice model is operationalized.
The system represented in Figure 5.1 captures the elements of what
has always had to happen to maximize health. But the digital revolution
Chapter 17 Health Communication in the New Media Landscape 441
has greatly increased how the flow of communication can and should
operate. It holds the promise of far more effective relationships among
the elements shown here.
The chapters in this volume explicate many of the critical connec-
tions shown in the model. So that readers can make best use of the book,
we outline how each chapter contributes to improving health communi-
cation and, thus, health outcomes.
Chapter 1, “The Challenge of Health Care and Disability,” outlines
the current state of health in the United States and the world. It dis-
cusses the three determinants of health: access to health care, health
policies, and intervention. These processes are represented as vectors in
Figure 1.1. The chapter is important because it provides a sense of how
great the challenge of chronic disease is (accounting for two-thirds of all
U.S. deaths). It also shows that much of chronic disease could be pre-
vented because it is caused by tobacco use, too little exercise, and poor
diet. The chapter chronicles the challenge that people have accessing
health care and how cultural disparities influence access.
Another topic discussed in chapter 1 is the challenge of health care
quality. A significant portion of health care is flawed and results in loss of
life, long-term health problems, and heightened costs. Health care is repre-
sented in Figure 1.1 as a critical intervention in health and acute and chron-
ic disease. Finally, there is the question of skyrocketing health care costs
in recent years. Costs are represented in terms of all the interventions—
self-care, health literacy, social support, health care, and health care
access—although the chapter argues that the most significant impact of
cost is for care and access.
Chapter 2, “Emerging Demographics and Health Care Trends,”
exam ines how people’s demographic features have a profound impact
on their health. This chapter distinguishes societal, community, and in-
dividual indices of health, marking the impact of most of the vectors sur-
rounding the center of Figure 2.1, individual health and non-health. The
chapter shows how race and income are important considerations that
must be taken into account when one is attempting to find effective ways
to deliver health, nutrition, and exercise messages to people. It further
elaborates how communicating with the elderly, females, those living
alone, those with disabilities, and those for whom English is a second
language requires considerable attention in order for effective commu-
nication to occur. Indeed, the diversification of ways to communicate en-
abled by the Internet and digital devices may lead to a marked increase
in communication about the five kinds of intervention that affect health
and non-health status.
442 Health Communication in the New Media Landscape
Chapter 3, “Communication Strategies for Reducing Racial and
Cultural Disparities,” continues the examination of how differences
among individuals affect how health interventions must be designed and
executed. While the literature shows that advertising is effective for all
groups, combining advertising through traditional media channels with
those that employ the Internet and new digital devices is clearly supe-
rior. This chapter also reviews how selection of media channel becomes
even more critical when individuals of various racial and cultural minor-
ity groups are targeted.
Chapter 4, “Health Communication: Trends and Future Directions,”
examines many of the media choice model aspects of Figure 1 illustrated
in the double-arrow relationships. It elucidates what makes physician–
patient communication effective and how use of digital media can make
a difference. It explores how community-based communications, those
that come from private and public organizations, and those that come
from health communication advocates influence all five of the interven-
tions affecting health and non-health. Most importantly, the chapter looks
at how the digital interface among all these messages and individuals has
been directly and drastically influenced by digitization. Examples of the
digital interfaces discussed in the chapter include health lifestyle tools,
personal health records, more effective delivery of health news, improved
health literacy, and the impact of health social networks.
Chapter 5, “Emerging Trends in the New Media Landscape,” intro-
duces a simple but powerful model for understanding the process of health
communication and how it should be conceptualized in a media environ-
ment to which digital media have been added. The media choice model
suggests that every use of a medium is motivated by one of four needs:
connectivity, information, entertainment, and shopping. The choices
people make to satisfy their communication needs are determined by
individual differences like demographics (e.g., race, income, education,
gender) or psychosocial variables (e.g., subculture, lifestyle). The choices
are also determined by “aperture,” that is, the natural ebb and flow of
various motivations across the day, week, month, or life stage. Before the
digital revolution, the main features that the communication channels
provided were print, sound, moving images, portability, and scannabil-
ity. In recent years, the Internet and digital devices greatly expanded the
media features available (e.g., immediacy, customizability, interactivity,
search, and mobility). The chapter goes on to provide an array of exam-
ples of how this digital world of media choices has changed and will con-
tinue to change almost every aspect of health communication.
Chapter 17 Health Communication in the New Media Landscape 443
Chapter 6, “Enhancing Consumer Involvement in Health Care,”
explores how health care information on the Internet has changed how
people become involved in their own care and how they find and pur-
chase products such as pharmaceuticals and services usually provided by
doctors and hospitals. It further examines how these changes may slow
the rise of health care costs. The chapter analyzes whether individuals are
ready to become even more involved in their own health care interven-
tions. Opportunities made possible by the digital environment include
online personal health records, greater and more convenient access to
health care, more help for people looking for high-quality health infor-
mation on the Internet, and more networking among different providers
of health care for individuals.
Chapter 7, “E-Health Self-Care Interventions for Persons With
Chronic Illnesses: Review and Future Directions,” offers a complete
report on research focusing on how people try to provide health care for
themselves when they have diabetes, heart disease, or mental illness, all
common chronic conditions. The authors conclude that telecommunica-
tions approaches are becoming more critical in fulfilling the need for self-
care information. The Internet and the telephone both greatly increase
the number of alternative information sources. In fact, research shows
that experiments on the combination of routine care with telephone-
and Internet-delivered information demonstrates how media-enhanced
communications are more effective. The authors conclude that the main
advantages of the media-enhanced conditions are the opportunities for
tailoring and individualizing messages.
Chapter 8, “Increasing Computer-Mediated Social Support,” devel-
ops the argument that the support of others is crucial for people cop-
ing with chronic health problems and for preventing health problems.
Communicating with others reduces stress and provides people with
increased ways to cope, a process called “buffering.” Of course, just as
suggested by the media choice model, the Internet brings vast increase
in the number of opportunities to communicate with others. The advan-
tages of gaining social support through digital communication include
fewer in-group/out-group biases, largely because there are fewer indi-
vidual difference cues on the Internet. It appears that expressing one’s
problems in writing is efficacious for individuals. Distant others can be
brought closer. There is evidence that people feel better about asking
for help when they are in an interactive environment where they can
also provide help to others as well. Disadvantages to the Internet envi-
ronment include the fact that sporadic and short-term use may not be
444 Health Communication in the New Media Landscape
sufficient to fill social needs. Marketers can also be a disruptive force in
social support sites. This chapter clearly explains the increased potential
for social support that will be available as digital approaches continue to
develop.
Chapter 9, “Engaging Consumers in Health Care Advocacy Using
the Internet,” focuses on what makes advocacy efforts effective in the
digital landscape. The chapter demonstrates how the principles of
effective health advocacy translate from the pre-Internet environment
to the current one. It suggests that the four most important principles
are leveraging assets of the advocacy organization, using marketing
campaign strategies, bringing together as many allies as possible, and
framing health issues in terms of their social rather than individual ben-
efits. The chapter demonstrates how to translate these principles to the
Internet.
Chapter 10, “Improving Physician–Patient Communication,” exam-
ines the complex world of this relationship and how it has been changed
by significant digital developments. Of course, the complexities of the
physician–patient relationship are significant: how the disease and illness
experience is communicated; treatment of the “whole person”; man-
agement of medications, treatments, side-effects, and on the like; focus
on prevention; and ways to improve the physician–patient relationship.
Research has shown that these challenges have been mitigated by new
media interventions like e-mail, telemedicine, online health informa-
tion, wireless handheld devices like PDAs and cell phones, blogs, and
laptops.
Chapter 11, “Health Literacy in the Digital World,” elaborates on
how many Americans have low health literacy and what this means for
their health and non-health. The chapter introduces the concept of
“health literacy load,” that is, how much complexity there is in terms
of vocabulary, concepts, and total amount of information needed. The
chapter then applies the concept to two experiments, one on geographic
information systems that instruct people about where to go and what to
do in an emergency, the other on the problems of developing electronic
medical records. In both cases, it is clear that the concept of health liter-
acy load is important in the development of better ways to communicate
critical health care information to those with low health literacy.
Chapter 12, “Making the Grade: Identification of Evidence-based
Communication Messages,” begins by showing how new research on
mental health has not effectively reached people. A central problem is
that it is not clear how to measure the quality of mental health research.
The chapter points out that a number of organizations have been involved
Chapter 17 Health Communication in the New Media Landscape 445
in this effort and have tried to come up with rating scales and criteria for
quality. For example, the federal Agency for Healthcare Research and
Quality identifies three criteria: how well the study is carried out, the
number of studies carried out and the number of people represented in
those studies, and finally the consistency of findings across all the stud-
ies. Unfortunately, consumers are generally not informed about these
dimensions of quality and therefore can be misled by generalizations
based on poor research.
Chapter 13, “New Strategies of Knowledge Translation: A Knowl-
edge Value Mapping Framework,” is concerned with identifying and
getting best practices knowledge to health care providers. Integrating
best practices into the routines of providers is a process called knowl-
edge translation. Only by making routines consistent with best practices
can health care be optimized. This is particularly critical for treatment of
chronic disease. Clearly communication occupies a central role in knowl-
edge translation. Unfortunately, evidence is clear that there is a signifi-
cant gap between known best practices and the routines of providers.
The chapter extensively reviews problems related to effectively fostering
knowledge translation. It concludes by suggesting that an important step
involves mapping the values of providers and patients and using that
map as a guide to effectively translating best practices into caregiver
routines. For example, there might be a mismatch between the needs of
caregivers and the elderly, and these differences may call for a reanalysis
of the caregiver’s role. This can lead to new and more effective interven-
tions. Given the complexity of determining the relationship of needs to
care, it is clear that the Internet, databases, and other digitally enabled
approaches can be important tools.
Chapter 14, “International Innovations in Health Communications,”
outlines best practices in using electronic and digital media to serve the
needs of global health diplomacy. The chapter discusses blogs, chat
rooms, radio broadcasts, wikis, and social networks in terms of their util-
ity in meeting international health challenges. A number of case studies
highlight how these new media communication approaches have been
applied. In a condom promotion campaign in Kenya, satellite broadcasts
to digital radios created local acceptance and made the issue of condom
use culturally relevant. In New Zealand, a Web site was developed to
make information about bird flu immediately available to anyone with
Internet access. Another plan involved handheld computers being con-
nected with a geographic information system network.
Chapter 15, “Connecting Cognate Fields: Health Communication
and Biomedical Informatics,” develops a model of how these two fields
446 Health Communication in the New Media Landscape
relate and complement each other. Biomedical informatics is defined
as the management and use of biomedical information based on
information technologies such as computer-based databases. At its
heart, the model suggests that the power of bioinformatics lies in
enabling translation of complicated data and information about the
needs, preferences, and demographics of health consumers and
patients. Computer algorithms can then organize the information so
it is possible to generate individualized messages. In the model pre-
sented in Figure 15.1, biomedical informatics is represented as a trans-
lational system between basic research and best practices. Chapter 15
elaborates on how informatics provides an interface between basic
research and best practices and thus can inform all the other sectors
in the chart: individuals, nonprofit and for-profit health organizations,
government, and health advocates. Biomedical informatics is thus a cor-
nerstone of health communication in the digital environment.
Chapter 16, “New Media: A Third Force in Health Care,” posits that
the media created by the digital revolution can be thought of as a third
force, together with private and public sectors of health care. Examples
of this new area include telehealth, access to electronic health records,
and health literacy approaches enhanced by the Internet and digital
devices. Similarly, systems of “pay for performance,” which reward qual-
ity health care and thus improve the health of patients, show promise.
The chapter focuses on how these approaches can be combined to deal
with the rapidly increasing number of seniors and the accompanying
health challenges of this demographic.
SUMMARY AND CONCLUSIONS
The study of how the Internet and digital-based devices and systems
can be used to improve both prevention and care of chronic and acute
health conditions is in its infancy. The broad brushstrokes painted in
these chapters offer a picture of our current knowledge about the impact
of this new media landscape on all the components of health care shown
in Figure 17.1. The goal of this effort is to help practitioners, adminis-
trators, and policy makers understand more about the promise of new
media tools and services for improving health. It is also our hope that
these ideas will serve as a launching point for more innovative ideas and
the research necessary to test their effectiveness.
447
Index
AARP, health care advocacy by, 275
Advertising, mass media channels for, 94
African American women, mass media
health campaigns and
for cardiovascular disease and, 45
for domestic violence prevention, 46
AMA. See American Medical
Association
American Indians, infl uenza vaccination
and, mass media health campaigns
for, 46
American Medical Association
(AMA), 295
Americans for Quality Health Care
Campaign, 275
Americans with Disabilities Act, 10
Aperture concept
health communication media choice
model and, 105 – 106
for target audience, 111 – 112
“Augmenting Human Intellect: A
Conceptual Framework”
(Engelbart), 122
Autonomy
assaults on, 131 – 132
connective journalism and, 134
health portals and, 133 – 134
need for, 130 – 135
new media landscape and, 132 – 135
personal health records and, 133
self-help tools for, 132 – 133
Behavior modifi cation
health care outcomes via, 345 – 347
knowledge gap and, 344 – 345
Bienvenida Salud radio program, 377
health communication by, 378
Biomedical informatics, 396 – 401
cognitive-level content of, 407 – 408
collaboration opportunities for,
409 – 412
benefi ts for, 412 – 413
health communication and, 445 – 446
medical informatics and, 396 – 398
multidimensional theories for, 408 – 409
noncommunication aspects of, 406
summary/implications of, 413
Braintalk Communities, 272 – 273
Canadian Institutes of Health Research,
342
Cancer
cervical, mass media health campaigns
for, 46
self-care intervention for, 168 – 169
Cardiovascular disease
mass media health campaigns for,
African American women and, 45
prevention for, 164
self-care intervention for
telephone-based results, 164 – 165
Web-based results, 163 – 164
Celebrities
as entertainment, 104 – 105
health communication and, 104 – 105
Center for Medicare and Medicaid
Services, 426
on health care expenditures, 11 – 12
Center of Medicare and Medicaid
Services, 296
448 Index
Centers for Disease Control and
Prevention, 6 – 7, 245, 259
on health care expenditures, 12
on life expectancy, 13
Challenges
of consumers, 269
of disability, 3 – 19
of health care, 3 – 19, 269, 280
of health communication, 80 – 88
of knowledge translation, 351 – 352
of U.S., 12 – 14
Children, lead paint exposure and, 45
Chronic disease
burden of, 6 – 7
e-health interventions and, 175 – 232
GDP reduced by, 16
macroeconomic dimensions to, 16
patients/Internet use and, 152
poverty and, 15 – 16
risk factors for, 7 – 8
self-care interventions for, 165 – 166
U.S. population and, 268 – 269
worldwide health status and, 14
Chronic pain, self-care intervention for,
167 – 168
Clinical information, for patient-centered
health care, 17 – 18
Cochrane Collaboration, 136
goals of, 331
Cognitive-level content, of biomedical
informatics, 407 – 408
Commonwealth Fund, 268, 269
Communication. See also Community-
based health communication;
Health communication; Physician-
patient communication
asynchronous/synchronous, 248
diversifi cation of, 441
from Internet, 437
need for, 101 – 105
connectivity as, 102 – 103
entertainment as, 103 – 105
individual differences in, 105
information as, 103
shopping as, 105
nontraditional methods for, 417
real-time/delayed-time, 124
revolution of, 124
Shannon model for, 404 – 409
Communication agenda, knowledge
translation and, 342 – 348
Communication systems
for patient-centered health care, 17
symbolic interaction and, 122
Community-based health communication,
66 – 69
capacity-building aspect of, 68
empowerment by, 67
formal/informal networks of, 67
rationale for, 67
social capital and, 68
technology and, 68 – 69, 76
Competency, new media landscape and,
135 – 137
Computer-mediated social support,
243 – 261, 443 – 444
accessibility of, 252
awareness rise for, 259
conclusion on, 261
convenience of, 250
education for, 260
e-health interventions and, 259 – 260
immediacy lacking from, 251
increase of, 258 – 261
misrepresentation from, 252
research on
advantages of, 248 – 251
disadvantages of, 251 – 252
stigmatization lessened by, 249
theoretical approaches to, 252 – 258
optimal matching model and, 257 – 258
social comparison theory and, 256 – 257
social information processing theory
and, 253
weak tie social network theory and,
253 – 256
Condom promotion campaign
in Kenya, 376 – 378
by Population Services International,
376 – 378
Connective journalism, 134
Connectivity
as communication need, 102 – 103
health information related to, 110
Index 449
Consumer(s). See also Consumer
participation
company loyalty and, 132
connective journalism and, 134
EMR access and, 424 – 425
functional health literacy and, 136
health care challenge for, 269
health portals and, 133 – 134
information prescription and, 136 – 137
needs/perceptions of, 129
autonomy, 130 – 135
competency, 135 – 137
relatedness, 138 – 141
in new media environment, 122
personal health records and, 133
skill augmentation and, 137
transformation of, 124 – 125
ubiquitous health care and, 134 – 135
worry/concern of, 269 – 270
Consumer participation
in health care, 74 – 75, 119 – 143, 443
human factors and, 122 – 123
Data smog
health information and, 121
medical research and, 142
DBI. See Digital Broadcasting Initiative
Debt obligations
of Medicare/Social Security, 13
of U.S., 13 – 14
Demographics
health care and, 29 – 32, 441
health communication media choice
model and, 101
Internet and, 97
Developing world
international innovations and, 389
technology limitations in, 388 – 390
Diabetes management, self-care
intervention for, 159 – 163
telephone-based, 162 – 163
Web-based results, 160 – 162
Digital Broadcasting Initiative (DBI)
communication breakdowns
within, 382
health communication interventions
from, 381
production organizations development
by, 381
technology emergence and, 380 – 382
Digital revolution
changes to, 438
e-mail and, 437 – 438
Internet and, 437
Disability
challenges of, 3 – 19
health information on, 336
U.S. Census Bureau tracking of, 30
U.S. population and, 30
Disability Right to Know clearinghouse,
knowledge translation and, 332
Disaster, mapping for, 307 – 316
Disparities. See Gender disparities;
Health disparities; Racial/cultural
disparities
Diversity
from computer-mediated social
support, 249
health care and, 75 – 76
of knowledge value mapping, 359
of U.S. population
implications of, 32
racial/ethnic/immigrant, 30 – 32
Domestic violence prevention, mass
media health campaigns for,
African American women and, 46
Ecological model, of social health
determinants, 23 – 27
overview of, 26 – 27
eHealth Initiative Foundation, 271
E-health interventions
for chronic disease self-management,
175 – 232
computer-mediated social support and,
259 – 260
conceptual/methodological issues on
cost-effectiveness, 172
limitations of, 170 – 171
optimal fi t for, 172
racial/ethnic groups and, 173
research shortcoming and, 171
conclusion on, 174
games/simulations and, 155
450 Index
inclusion criteria for, 154
methodology of, 153
practice implications and, 173 – 174
results of, 153 – 154
telecommunication and, 153 – 154
ElderSmile digital maps, 28 – 29
Electronic media
expansion of, 432
health literacy and, 433
limitations/abilities of, 375
P4P and, 425
U.S. population and, 429 – 431
Electronic medical records (EMRs),
313 – 316, 317
complex vocabulary and, 318
consumer/patient access to, 424 – 425
self-management strategies and, 315
E-mail
availability of, 437 – 438
digital revolution and, 437 – 438
physician-patient communication and
advantages of, 290
barriers/concerns regarding, 290
content analyses of, 291 – 292
low use of, 289
resistance to, 289
emedicine.com, 325
Emergency preparedness
fi ndings of, 312
GIS/health literacy and, 307 – 312
methods for, 311 – 312
Ready New York and, 310
EMRs. See Electronic medical records
Engelbart, Douglas, 122
Entertainment
celebrities as, 104
as communication need, 103 – 105
health information related to, 110
E-patients, health care needs of, 270
To Err Is Human (IOM), 10
Ethnic groups. See United States
Evidence-based communication,
325 – 338, 444 – 445
knowledge gap and, 326 – 327
knowledge translation need and,
329, 355
misalignment of, 353
research and
consistency and, 330 – 331
quality of, 330
quantity of, 330
research quality for, 329 – 331
summary/conclusions on, 337 – 338
Evidence-based medicine
criteria/origin of, 356
research for, 356 – 357
Facebook, 94, 245, 276
Femara, 119, 121
GATHER. See Geographic Analysis Tool
for Health & Environmental
Research
GDP. See Gross domestic product
Gender disparities, in health care, 79 – 80
Geographic Analysis Tool for Health &
Environmental Research
(GATHER), 308
Geographic information system (GIS),
307
background information on, 308
capability of, 309
commonality of, 308 – 309
disease-specifi c information from, 308
emergency preparedness and, 307 – 312
fi ndings of, 312
Ready New York and, 309 – 311
understanding of, 309
Get Healthy Harlem Web site, 27
GIS. See Geographic information system
Global health diplomacy, emerging
technologies and, 374 – 375
Globalization
health communication and, 75
worldwide health status and, 14 – 15
Gross domestic product (GDP), chronic
disease’s reduction of, 16
Handbook of Health Communication, 63
Harlem Health Promotion Center, 23, 34
Harlem Smoke-Free Home Campaign,
27 – 28
Hartford Health Department, 45 – 46
E-health interventions (continued )
Index 451
Health assessments
of nations, 5 – 6
of U.S., 6
Health campaign. See Mass media health
campaigns
Health care
access to, 4, 82 – 83, 419
in U.S., 8 – 9
challenges of, 3 – 19, 269, 280
consumer concern/worry of, 269 – 270
consumer participation in, 74 – 75,
119 – 143, 443
costs of, 9, 151, 243, 268, 430
defi nition variations of, 3 – 4
demographics and, 29 – 32, 441
disruptive innovations in, 18
expenditures of, 11 – 12
for increasing number of seniors,
32 – 34
needs for
of e-patients, 270
Internet use for, 270 – 273
networks of, 140
new media and, 446
as third force, 432 – 433
new turn in, 119 – 121
outcomes of, by behavior modifi cation,
345 – 347
passive v. proactive approach to, 120
patient-centered, 17 – 18
quality of, 85 – 86, 269, 424 – 427
EMR and, 424 – 425
medical errors and, 10
transparency and, 425 – 427
in U.S., 9 – 10
technology and, 76
traditional model of, 131
transformation of, 125 – 126
trends of, 32 – 35, 73 – 81
diversity increase as, 75 – 76
gender disparities in, 79 – 80
health disparities in, 34 – 35, 76 – 77
racial disparities in, 78 – 79
senior citizens and, 32 – 34
SES and, 78
ubiquitous, 134 – 135
web-based model of, 131
Health care advocacy
by AARP, 275
Internet and, 267 – 280
lobbying activities for, 274 – 275
need for, 268 – 269
for public policy, 273 – 274
relatedness and, 139
summary/research on, 279 – 280
Health care policy
action plan for, 276 – 277
advocating for, 273 – 274
health communication and, 71 – 73
interest groups for, 277, 278 – 279
interest in, 277
Internet use for, steps for, 276 – 279
issue defi nition and, 276
rhetoric/practices of, 72, 73
success methods for, 279
support for, 278
translation of, 277 – 278
Health care research
day-to-day function for, 333
beyond quality of, 333 – 335
meaning rating for, 334 – 335
rate/synthesize initiatives for, 331 – 332
grading systems for, 332
shifts in, 356
standard approach lack for, 333
Health care system
discrimination in, 35
fragmentation of, 36
negative consequences of, 418
politics/societal values and, 36
private/public sectors of, 417 – 418
healthcentral.com, 325
Health communication, 401 – 404. See
also Community-based health
communication; Media-based
health communication
analysis levels for, 402 – 403
by Bienvenida Salud, 378
biomedical informatics and, 445 – 446
conclusion on, 88 – 89
as confusing/contradictory, 328 – 329
connective journalism and, 134
contexts of, 60 – 63
from ecological perspective, 60 – 61
452 Index
culture-centered approach to, 80 – 82
participatory spaces and, 81
structure of, 81
DBI interventions for, 381
digital revolution and, 93
effectiveness of, 348
globalization and, 75
grand challenges in, 80 – 88
culture and, 83 – 85
future emphasis and, 83
health care access and, 82 – 83
health care quality and, 85 – 86
health care policy and, 71 – 73
human communication and, 403
implications for, 109 – 112
“Interactive Teaching AIDS” and, 387
international innovations in,
373 – 392, 445
knowledge translation and, 440
macro-level emphasis in, 62
mass media channels for, 47 – 51,
69 – 70
general audience v. ethnic, 49
media content of, 50 – 51
media use of, 48 – 50
media and
celebrities and, 104 – 105
exposure standpoint of, 70 – 71
information-/entertainment-based, 69
motivation for, 71
meso-level emphasis in, 61 – 62
micro-level emphasis in, 61
in new media landscape, 35, 437 – 446
related disciplines for, 403 – 404
research foci/variables for, 404 – 409
overlapping of, 406
senders/receivers in, 408
successful campaigns for, 391
technology and, 86 – 88, 100
tools of, 27 – 29
trends/future directions of, 59 – 89, 442
U.S. racial/ethnic groups and
research on, 43 – 44
segmentation and, 43
voice in, 107 – 109
Health Communication, 63
Health communication media choice
model, 95, 99 – 109, 440 – 441
aperture concept and, 105 – 106
concepts for, 101
demographics/lifestyles
infl uencing, 101
elements of, 102
media features of, 106 – 107
usability of, 108
Health disparities
defi nition of, 41
in health care, 34 – 35, 76 – 77
inequities and, 42 – 43
Health information
abundance of, 120
accuracy of, 260, 337
availability of, 120, 271, 325
credibility/value of, 326
data smog and, 121
digital communication and, 94
on disabilities, 336
doctor-patient interactions and, 99
information/entertainment/connectivity
needs related to, 110
interactive applications for, 420 – 421
Internet and, 97
issue regarding, 319 – 320
knowledge gap and, 326 – 327
knowledge translation promotion and,
335 – 337
medical personnel needed for, 129
omissions/errors of, 94
online
benefi ts of, 293
disadvantages to, 294
physician-patient communication
and, 293 – 294
quality of, 293
use of, 294
search engines and, 99
sources of
confi dence in, 128 – 129
trust in, 129
transmission of, 440
Health Information National Trends
Survey (HINTS), 127
on patient activation, 127 – 129
Health communication (continued )
Index 453
Health literacy, 303 – 320, 444
as barrier, 427 – 428
civic, 306
conclusion on, 318 – 320
cultural, 306
defi nition of, 304 – 307
demands of, 319
digital divide and, 428 – 429
electronic media and, 433
emergency preparedness and, 307 – 312
functional, 136
fundamental, 305
load analysis of, 316 – 318, 319
mass media health campaigns
and, 53 – 54
mechanisms of, 306 – 307
misperceptions and, 306
new media and, 427 – 429
profi ciency in, 303 – 304
medical regimes and, 304
science, 305 – 306
skills/concepts for, 316 – 318
“Health on the Web” (Public
Broadcasting System), 119
Health outcomes, social support and,
246 – 247, 260
Health portals, consumers and, 133 – 134
Health records. See Electronic medical
records; Personal health records
Health status
determinants of, 4 – 5
ecological model of, 23 – 27
infl uential factors and, 26 – 27
infl uences on, 438 – 440
in U.S., 6 – 14
chronic disease burden, 6 – 7
chronic disease risk, 7 – 8
future challenges of, 12 – 14
health care expenditures, 11 – 12
worldwide, 14 – 17
chronic disease and, 14
globalization and, 14 – 15
poverty and, 15
Healthy People 2010, 283
health determinant framework of, 4 – 5
HINTS. See Health Information National
Trends Survey
Hispanics, wellness guides and, mass
media health campaigns for,
46 – 47
Human communication
functions of, 403
health communication and, 403
Inequities, health disparities and, 42 – 43
Infl uenza vaccination, mass media health
campaigns for, American Indians
and, 46
Informatics. See also Biomedical
informatics; Medical informatics
clinical, 400
consumer health, 400 – 401
public health, 400
Information
as communication need, 103
health information related to, 110
prescriptions for, 136 – 137
revolution of, 122 – 123
unfettered access to, 123 – 126
from World Wide Web, 123 – 124
Information Therapy (Kemper/Mettler),
136
Innovations, international
developing world and, 389
in health communication, 373 – 392
new media landscape and, 376 – 380
Institute of Medicine (IOM), 34, 314, 425
on health care quality, 9 – 10
“Interactive Teaching AIDS”
criticisms on, 387 – 388
health communication and, 387
target audience and, 386 – 388
International health care community,
knowledge translation and, 342
Internet. See also World Wide Web
availability of, 288, 336
demographic differences in, 97
digital revolution and, 437
family/friend relationships and,
245 – 246
health care advocacy and, 267 – 280
for health care needs, 270 – 273
health information and, 97
impact of, 446
454 Index
mass communication from, 437
New Zealand Ministry of Health’s use
of, 383
patient activities on, 128
chronic disease and, 152
population’s use of, 97
disabilities and, 335 – 336
rapid adoption of, 243
search engines and, 99
self-management strategies and,
270 – 273
senior citizen’s use of, 429 – 431
SES and, 335
social support sources on, 244 – 246
disadvantages of, 443 – 444
use of, 127 – 128, 245 – 246
IOM. See Institute of Medicine
Kaiser Family Foundation, 6, 50, 268
on health care costs, 9
Kemper, D.W., 136
Kenya, condom promotion campaign in,
376 – 378
Knowledge fl ows
content/value in
value combinations, 355 – 358
value interaction in, 352 – 355
dynamics of, 367
implications of, 352
knowledge value mapping and, 361
paths/uses of, 353
studies of, 353 – 354
Knowledge gap
behavior modifi cation and, 344 – 345
health information and, 326 – 327
passive approaches to, 327
scientifi c publications and, 357
symptoms of, 345
Knowledge translation, 327 – 329, 445
application/utilization of, 357
Canadian Institutes of Health Research
on, 342
communication agenda and,
342 – 348
challenges of, 351 – 352
gap between, 344 – 345
as communication problem, 347 – 348
conclusion on, 365 – 367
defi nition of, 342 – 343, 354
decision making and, 343 – 344
desired outcomes from, 345 – 347,
354 – 355
Disability Right to Know clearinghouse
and, 332
evidence-based communication
and, 355
need for, 329
health communication and, 440
information glut and, 346
international health care community
and, 342
knowledge value mapping and,
359 – 365
measures/approaches to, 354
National Institute for Disability and
Rehabilitation Research on,
342 – 343
need for, 363
network patterns for, 350 – 351
policy dimension from, 351
processes/boundaries of, 358
producer-user communities for,
348 – 352, 366
interactions of, 349
paths/transformation of, 349
promotion of, 335 – 337
reformulations/articulation of,
350 – 351
social practices and, 366
sustainability of, 364 – 365
theoretical model for, 347, 355
transfer v., 327
useful understanding of, 351
Knowledge value mapping, 359 – 365
analysis/diversity of, 359
description strategy for, 359
evidence base emphasis of, 359 – 360
intervention applications of, 362
knowledge fl ow and, 361
knowledge translation and, 359 – 365
producer-user communities and,
361, 364
sustainability of, 364 – 365
Internet. (continued )
Index 455
Lead paint exposure, children and, 45 – 46
Leapfrog Group, 425 – 426
Life expectancy, in U.S., 12 – 13
Living arrangements, of U.S. population, 30
Macroeconomic dimensions, to chronic
disease, 16
Mass media channels
for advertising, 94
for health communication, 47 – 51,
69 – 70
general audience v. ethnic, 49
media content of, 50 – 51
media use of, 48 – 50
magazines/newspapers as, 50 – 51
selection of, 100 – 101
types of, 373
U.S. racial/ethnic groups and, 48
Mass media health campaigns
cautions on, 53
conclusions on, 53 – 54
cultural/racial disparities reduced by, 42
future of, 52 – 53
by Hartford Health Department,
45 – 46
health literacy and, 53 – 54
research on, 43 – 44
for U.S. ethnic/racial groups, 44 – 47
cardiovascular disease and, 45
cervical cancer and, 46
domestic violence prevention
and, 46
infl uenza vaccinations and, 46
lead paint exposure and, 45 – 46
results of, 45 – 47
wellness guides and, 46 – 47
Media. See also Web-based media
choices of, 95 – 96
changes in, 96, 97
communication need and, 101 – 105
connectivity as, 102 – 103
entertainment as, 103 – 105
individual differences in, 105
information as, 103
shopping as, 105
electronic, 423
transparency quality of, 425 – 427
features of, 106 – 107
target audience preference for, 110
usability of, 108
health communication and, 69 – 71
celebrities and, 104 – 105
exposure standpoint of, 70 – 71
information-/entertainment-
based, 69
motivation for, 71
insurance-based, 423
technology-enabled, 95 – 96
Web migration of, 96 – 98
Media-based health communication, 70
Media choice model. See Health
communication media choice
model
Medical education, digital technology
and, 295
Medical errors, health care quality and, 10
Medical informatics
application domains for, 399 – 401
clinical informatics, 400
consumer health informatics,
400 – 401
public health informatics, 400
biomedical informatics and, 396 – 398
component sciences and, 398 – 399
technology functions of, 397 – 398
Medical interview
physician-patient communication and,
284 – 285
structure of, 284
Medical personnel
complex skills of, 366
institutionalization of, 365 – 367
need for, 129
Medical research
data smog and, 142
transformation of, 126
Medicare, debt obligations of, 13
Medicine. See Evidence-based medicine
Medline, 153
Mental health interventions
self-care intervention and
telephone-based results of, 158 – 159
Web-based results of, 156 – 158
self-help Web sites for, 157
456 Index
Mettler, M., 136
Motivation
for health communication, media
and, 71
study of, 130
My Life, My Decision (DVD), 27
MySpace, 94, 245, 276
National Cancer Institute, 138, 245, 395
National Center for Health Statistics
on health care expenditures, 12
on life expectancy, 13
National Health Service, 353
National Institute for Disability and
Rehabilitation Research, 342 – 343
National Institutes of Health, 245, 259
National Library of Medicine, 121, 141
National Survey on Electronic Personal
Health Records, 271
Nations, health assessment of, 5 – 6
New media
health care and, 446
as third force, 432 – 433
health literacy and, 427 – 429
increased sources of, 418
information obtainment/immediacy
and, 418
limited access to, 420 – 421
past experiences of, 375 – 380
privacy protection and, 422 – 423
programming customized and, 418
public telehealth and, 421 – 422
universal broadband for, 421
New media landscape, 442
autonomy and, 132 – 135
caveats/research opportunities from
advances in, 141 – 142
collaboration and, 142 – 143
competency and, 135 – 137
functional health literacy, 136
information prescriptions, 136 – 137
skill augmentation, 137
concerns regarding, 392
conclusion on, 143, 390 – 392
consumer behavior in, 122, 124 – 125
emerging trends in, 93 – 112
fi nancial sector transformed by, 124
health care transformation by, 125 – 126
health communication in, 35, 437 – 446
research and, 98 – 99
information availability and, 18
international innovations and, 376 – 380
knowledge translation and, 341 – 342
by New Zealand Ministry of Health,
382 – 383
opportunities in, 18 – 19
patient-centered health care and, 19
physician-patient communication and,
288 – 295
digital technologies, 294 – 295
e-mail, 289 – 292
online health information, 293 – 294
telemedicine, 292 – 293
Population Services International
intervention as, 376 – 378
practical/operational challenges of,
295 – 296
relatedness and, 138 – 141
care networks, 140
health advocacy groups, 139
shared communities of knowledge,
140 – 414
successes of, 376 – 380, 391 – 392
vaccine day campaign and, 379 – 380
New York City Department of Health and
Mental Hygiene, 27
EMRs and, 314 – 315
New Zealand Ministry of Health
Internet use by, 383
new media landscaping by, 382 – 383
training provided by, 383
NGOs. See Women’s nongovernmental
organization
Obesity, in U.S., 7 – 8
ODIN. See Overcoming Depression on
the Internet
OECD. See Organisation for Economic
Co-operation and Development
Online health information. See Health
information
Optimal matching model, for computer-
mediated social support,
257 – 258
Index 457
Organisation for Economic Co-operation
and Development (OECD), 268
Overcoming Depression on the Internet
(ODIN), research on, 157
P4P. See Pay for Performance
Patient
activation of, 126 – 141
public readiness for, 127 – 129
autonomy need of, 130 – 135
EMR access and, 424 – 425
engagement of, 161
internet activities of, 128
stereotypes of, 135
Patient-centered health care, 17 – 18
clinical information systems for, 17 – 18
communication systems for, 17
importance of, 151
new media landscape and, 19
Pay for Performance (P4P)
digital/electronic media and, 425
initiatives of, 425
PDAs, Uganda Health Information
Network and, 386
Personal health records
consumers and, 133
development of, 272
interest in, 272
Pew Internet & American Life Project,
152, 275
Philippines, vaccine day campaign in,
379 – 380
Physician-patient communication, 64 – 66
benefi ts from, 286
components of, 287 – 288
concern regarding, 286
current state of, 285 – 286
doctor-centered v. patient-centered, 64
ecological model of, 66
ethical/legal issues on, 296 – 297
evolution of, 65 – 66
future implications for, 297 – 298
guidelines for, 295 – 296
improvement of, 283 – 298, 444
initiation of, 286
medical interview and, 284 – 285
new media landscape and, 288 – 295
digital technologies, 294 – 295
e-mail, 289 – 292
online health information, 293 – 294
telemedicine, 292 – 293
power balance of, 287
primary tasks of, 283
recent developments in, 286 – 287
reimbursement and, 296
satisfaction from, 64, 285 – 286
Stoeckle on, 285 – 286
time continuum, 287
training programs for, 65
variances of, 64
Physicians’ Current Procedural
Terminology, 296
Population
Internet use and, 97
of U.S.
aging of, 29 – 30, 97
disability and, 30
electronic media and, 429 – 431
living arrangements of, 30
sex ratio of, 30
Population Services International
condom promotion campaign of,
376 – 378
new media landscape use by, 376 – 378
Poverty
chronic disease and, 15 – 16
worldwide health status and, 15
Privacy protection, 422 – 423
Producer-user communities
for knowledge translation, 348 – 352, 366
interactions of, 349
paths/transformation of, 349
knowledge value mapping and, 349, 364
Pulmonary conditions, self-care
interventions for, 166 – 167
Racial/cultural disparities, 442
in health care, 78 – 79
reduction of, 41 – 54
Racial groups. See United States
Ready New York
emergency preparedness and, 310
fi ndings on, 312
GIS and, 309 – 311
458 Index
Relatedness
care networks and, 140
health advocacy groups and, 139
new media landscape and, 138 – 141
shared communities of knowledge and,
140 – 141
Responsive messaging, technology
emergence and, 382 – 383
Revolutionhealth.com, 103
SABRE. See Semi-Automated Business
Research Environment
Safe Guardian, 431
Saint Louis University School of Public
Health, 52
Sattelife handhelds, 385 – 386
Scientifi c publications
knowledge gap and, 357
value of, 357
Self-care interventions, 443
for cardiovascular disease
telephone-based results, 164 – 165
Web-based results, 163 – 164
for chronic disease, 165 – 166
for chronic pain, 167 – 168
for diabetes management, 159 – 163
telephone-based results, 162 – 163
Web-based results, 160 – 162
for mental health conditions
telephone-based results, 158 – 159
Web-based results, 156 – 158
for pulmonary conditions, 166 – 167
summary on, 169 – 170
systemic review, inclusion criteria for,
154
Self-determined behavior
analytic/structural equation for, 130
needs for, 130 – 141
Self-management strategies
components of, 152
e-health interventions and,
175 – 232
EMR and, 315
engagement in, 151
Internet and, 270 – 273
Semi-Automated Business Research
Environment (SABRE), 125
Senior citizens
health care trends for, 32 – 34
prevention/treatment for, 33
increasing number of, care for, 32 – 34
Internet use of, 429 – 431
life expectancy of, 33
lifestyles of, 33 – 34
Safe Guardian/Vodafone for, 431
technology and, 430 – 431
SES. See Socioeconomic status
Sex ratio, of U.S. population, 30
Shannon model of communication,
404 – 409
Shopping, as communication need, 105
Skill augmentation, competency and, 137
Smoking, in U.S., 8
Social capital, community-based health
communication and, 68
Social comparison theory, 256 – 257
Social information processing theory,
computer-mediated social support
and, 253
Social Security, debt obligations of, 13
Social support. See also Computer-
mediated social support
buffering model of, 246
health outcomes and, 246 – 247, 260
on Internet, 244 – 246
main effects model of, 246
relational concerns and, 247 – 248
role obligations and, 247
Socioeconomic status (SES)
in health care, 77 – 78
higher v. lower, 77 – 78
Internet use and, 335
State of the News Media Report (2008), 94
Stoeckle, J., 285 – 286
“Syphilis Victims in U.S. Study Went
Untreated for 40 Years” (New York
Times), 42 – 43
Target audience
aperture concept for, 111 – 112
“Interactive Teaching AIDS” and,
386 – 388
needs/preferences of, 109 – 110
for media features, 110
Index 459
Technology
adoption of, 298
community-based health
communication and, 68 – 69, 76
developing world limitations of,
388 – 390
as indispensable, 389
introduction of, 389 – 390
results/improvements to, 389
digital
medical education and, 295
physician-patient communication
and, 294 – 295
emergence of, 374, 380 – 390
conclusion on, 390 – 392
DBI and, 380 – 382
fi nancial cost of, 382
global health diplomacy and,
374 – 375
responsive messaging and, 382 – 383
Women Connect! and, 383 – 385
health care and, 76
health communication and, 86 – 88, 100
medical informatics functions of,
397 – 398
personalization of, 98
senior citizens and, 430 – 431
Web-based
advantages of, 155
power of, 155
wireless, 390
Telecommunication, 152
self-care intervention and
for cancer, 168 – 169
for chronic disease, 165 – 166
for chronic pain, 167 – 168
for diabetes management,
159 – 163
for mental health conditions,
156 – 159
for pulmonary conditions,
166 – 167
summary on, 169 – 170
Telehealth, public, 421 – 422
barriers to, 422
expansion of, 422
use of, 421
Telemedicine, physician-patient
communication and, 292 – 293
approach to, 292 – 293
power shift and, 292
Ubiquitous health care, 134 – 135
Uganda Health Information Network
PDAs and, 386
sattelife handhelds for, 385 – 386
technical glitches of, 386
Unequal Treatment: Confronting Racial
and Ethnic Disparities in Health
Care (IOM), 9, 34
United States (U.S.)
debt obligations of, 13 – 14
health assessment of, 6
health care access in, 8 – 9
health care system
negative consequences of, 418
private/public, 417 – 418
health status in, 6 – 14
chronic disease burden, 6 – 7
chronic disease risk, 7 – 8
disability in, 10 – 11
future challenges of, 12 – 14
health care expenditures, 11 – 12
heath care quality of, 9 – 10
life expectancy in, 12 – 13
obesity in, 7 – 8
population of
aging of, 29 – 30, 97
chronic disease and, 268 – 269
disability and, 30
electronic media and, 429
living arrangements and, 30
racial/ethnic/immigrant diversity of,
30 – 32
sex ratio of, 30
preventive behavior by, 121
racial/ethnic groups of
cardiovascular disease and, 45
cervical cancer and, 46
domestic violence prevention and, 46
health communication and, 43 – 44
infl uenza vaccinations and, 46
lead paint exposure and, 45 – 46
mass media channels and, 48
460 Index
mass media health campaigns for,
44 – 47
Web-based media and, 51 – 52
wellness guides and, 46 – 47
smoking in, 8
U.S. See United States
U.S. Census Bureau, 29
disability tracking by, 30
living arrangements tracking by, 30
racial/ethnic/immigrant diversity
tracking by, 30 – 32
sex ratio tracking by, 30
U.S. Department of Health and
Human Services
on health care expenditures, 12
on life expectancy, 13
Vaccine day campaign
new media landscape and, 379 – 380
in Philippines, 379 – 380
Vietnamese American women, cervical
cancer and, mass media health
campaigns for, 46
Vodafone, 431
Weak tie social network
access to, 254 – 255
advantages of, 254
computer-mediated social support and,
253 – 256
role/social obligation issues and, 255
similarity from, 256
Web-based media, 51 – 52, 138
migration to, 96 – 98
for U.S. racial/ethnic groups,
51 – 52
WebMD, 245, 279, 432
Web sites/search engines. See also World
Wide Web
health information and, 99
health-related, 245
Internet and, 99
Wellness guides, mass media health
campaigns for, Hispanics and,
46 – 47
Women. See African American women;
Vietnamese American women
Women Connect!
creation of, 384
emerging technologies and, 383 – 385
initiative for, 385
Women’s nongovernmental organization
(NGOs), technological limitations
of, 384
World Congress on Communication for
Development, 373
Worldwide health status
chronic disease and, 14
globalization and, 14 – 15
poverty and, 15
World Wide Web
competency of, 135
information obtained by,
123 – 124
self-help sites on, 157
United States (continued )
Contents
Contributors
Foreword
Preface
Acknowledgments
PART I: HEALTH COMMUNICATION: CURRENT STATUS AND TRENDS
1 The Challenge of Health Care and Disability
Assessing the Health of Nations
Overview of Health Status in the United States
Overview of Worldwide Health Status
Meeting the Health Care Challenge
Opportunities in the New Media Landscape
2 Emerging Demographics and Health Care Trends
Ecological Model of Social Determinants of Health
Emerging Demographics
Health Care Trends
Challenges and Opportunities
Call to Action
3 Communication Strategies for Reducing Racial and Cultural Disparities
Disparities and Inequities
Research on Health Communication and U.S. Racial/Ethnic Groups
Mass Media Health Campaigns for U.S. Ethnic/Racial Groups
Mass Media Channels
The Future of Mass Media Campaigns
4 Health Communication: Trends and Future Directions
Contexts of Health Communication
Areas of Health Communication
Key Trends in Health Care
Grand Challenges in Health Care Communication
5 Emerging Trends in the New Media Landscape
The Health Communication Media Choice Model
What’s Happening in Today’s Media?
Health Communication Research in the New Media Landscape
The Health Communication Media Choice Model
Implications for Health Communication
PART II: HEALTH COMMUNICATION IN THE NEW MEDIA LANDSCAPE
6 Enhancing Consumer Involvement in Health Care
The Day The World Changed
Purpose of the Chapter
Consumer Behavior in the New Media Environment
Human Factors
An Era of Unfettered Access to Information
The Activated Patient
Caveats and Research Opportunities
7 E-Health Self-Care Interventions for Persons With Chronic Illnesses: Review and Future Directions
Methodology
Results
Other Online Self-Help Programs for Various Chronic Diseases
Conceptual and Methodological Issues
Implications for Practice
8 Increasing Computer-Mediated Social Support
Sources of Social Support on the Internet
Social Support and Health Outcomes
Relational Concerns When People Seek/Provide Support
Research on Computer-Mediated Support Groups
Theoretical Approaches to the Study of Computer-Mediated Support Groups/Communities
Ways to Increase Computer-Mediated Social Support
9 Engaging Consumers in Health Care Advocacy Using the Internet
The Need for Health Care Advocacy
Consumer Use of the Internet to Support Health Care Needs
Traditional Approaches to Advocating for Policy
Health Care Advocacy
Increase in the Use of the Internet for Advocacy
Using the Internet for Health Care Advocacy
Summary and Areas for Further Research
10 Improving Physician–Patient Communication
Current State of Physician–Patient Communication
Recent Developments in Physician–Patient Communication
New Media and Physician–Patient Communication
Practical and Operational Challenges of New Media
Implications for the Future
11 Health Literacy in the Digital World
Defining Health Literacy
Mapping Our Way to the Next Disaster? GIS, Emergency Preparedness, and Health Literacy
Case Study: Electronic Medical Records
Health Literacy Load Analysis
PART III: FUTURE DIRECTIONS
12 Making the Grade: Identification of Evidence-Based Communication Messages
The Knowledge Gap
Knowledge Translation
Need for Knowledge Translation and Evidence-Based Practices
Rating the Quality of Research
Initiatives to Rate and Synthesize Health Care Research
Knowledge Translation and the Disablity Right to Know Clearinghouse
Beyond Research Quality
Promoting Knowledge Translation of Health and Mental Health Information
13 New Strategies of Knowledge Translation: A Knowledge Value Mapping Framework
Knowledge Translation and the Definition of a Communication Agenda
Communities of Producer-Users in Need of Translation
Content and Value in Knowledge Flows
Knowledge Value Mapping: A Framework of Knowledge Translation Strategy Design
Concluding Remarks: Do We Need a New Institutionalization of the Health Care Professions?
14 International Innovations in Health Communication
Lessons From Past Experiences
Emerging Technologies
Limitations of New Technology in the Developing World
15 Connecting Cognate Fields: Health Communication and Biomedical Informatics
Biomedical Informatics
Health Communication
Overlapping Research Foci and Variables
16 New Media: A Third Force in Health Care
Access to Health Care
Health Care Quality
Health Literacy
Aging of Americans and Digital and Electronic Media
The New Media as the Third Force in Health Care
17 Health Communication in the New Media Landscape: A Summary
Index
A
B
C
D
E
F
G
H
I
K
L
M
N
O
P
R
S
T
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V
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MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10 �
19
18
ISSN 1839-0188 October 2012 – Volume 10, Issue 9
Measuring level of public
relations in hospitals
page 9 ……
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10�
This is the ninth issue this year with
papers form the region looking at a
variety of issues.
A paper from Saudi Arabia looked at
Family Medicine Essentials (FAME)
model as a way to put clinical practice
guidelines into practice. The FAME
course includes seven modules and
each module is carried out in three
days. It is designed to give knowledge,
change attitudes, and improve skills in
a few main areas of family medicine
based on either international or national
established clinical practice guidelines.
The overall impact can be assessed
by pre-implementation and post-
implementation assessment; however,
individuals can be assessed by pre and
post-tests at the beginning and end of
each module. The FAME course is an
effort to put preferably national, but also
international, clinical guidelines into
practice through a well structured and
standardized training program based on
evidence-based medicine.
A cross-sectional study in Iraq was
conducted on 400 diabetics attending
INDC. This study aimed to identify
patients who experience continuity with
a physician in Iraqi National Diabetes
Center (INDC) and to determine its
contributory factors, and outcomes.
The percentage of patients who had a
personal doctor in INDC was 70.2%. The
findings of this study support the findings
of previous studies in highlighting the
importance and role of interpersonal
continuity in diabetes care. Policy makers
need to develop and activate programs
to improve continuity of care between
diabetics and their doctors.
A paper from Saudi Arabia explored
Diagnosis and Management of Short
Stature. The authors stressed that short
Stature can have intense implications on
the psychosocial health of children and
adolescents. The consequences can be
far reaching, affecting even adulthood.
The review provides an explanation of
the definitions and the terminologies
associated with short stature. An
evidence based approach is outlined
and the common treatment options are
discussed.
A paper from Jordan undertook a
prospective study to highlight the
essential role of hysteroscopy in the
evaluation and treatment of women
presenting with recurrent implantation
failure after in-vitro fertilization, recurrent
pregnancy loss, unexplained infertility
and abnormal uterine bleeding. They
found that hysteroscopy should be
From the Editor
FROM THE EDITOR
considered as early as possible in the
diagnostic work-up of these patients.
A paper from Iran looked at recent
advances in geographical sciences
and technologies i.e. Geographical
Information Systems (GIS) and the
further development of the Global
Positioning System (GPS), that offers
family doctors, public health officers and
non-government organizations (NGOs)
valuable tools with which to study the
‘place’ component of public health
problems, as well as areas in need of
doctors and medical facilities.
A descriptive-analytical study was
performed cross sectionally from Iran
to determine level of public relations in
hospitals. A questionnaire was used
for data collection. Samples consisted
of patients hospitalized in Zarand
hospitals; all were selected using simple
random sampling. Data was analyzed
using one sample t test through SPSS.
The studied hospitals performance
regarding public relations was higher
than average. The authors concluded
that average aspect of public relations
was medium. According to findings of
this study, several factors decreased the
level of public relations and the image of
hospital; recognizing these factors can
increase public relations in hospitals.
A cross-sectional survey was carried
out at well baby clinic and employee
health clinic in King Abdul Aziz Medical
City and well baby clinic at Health
Care Specialties Clinic (HCSC). Nearly
200 questionnaires were filled out
by the mothers and by face to face
interview. The aim was to explore the
pattern of breastfeeding in working
and non-working mothers and the
factors specifically related to work and
breastfeeding. The authors concluded
that breastfeeding is poor in both
working and non-working mothers. Work
has anegative impact on breastfeeding
pattern, however, lesser working hours,
breastfeeding breaks and support from
employers may help in restoring some
breastfeeding patterns.
A paper from Yemen explored the
clinical and paraclinical characteristics
of acute intravascular hemolysis
caused by primaquine so as to help
in prevention, early diagnosis and
treatment. Analysis of 57 cases of
acute intravascular hemolysis caused
by primaquine was made and a
literature review was done. All patients
had the history of administering
primaquine, with the symptoms of acute
hemolysis; the clinical and paraclinical
characteristics of acute intravascular
hemolysis were observed: sudden
attacks of lumber and abdominal pain,
vomiting, fever, oligo-anuria, temporary
consciousness loss, dark urine (black),
low hemoglobin, high reticular red
blood cell, and jaundice. The authors
concluded that when sudden attacks
of the above symptoms appear, the
acute intravascular hemolysis should
be taken into consideration first and
the giving of the primaquine orally be
immediately stopped. Active and proper
treatment should be made. Whilst
primaquine remains the drug of choice
to eradicate hypnozoites and control P.
vivax transmission, the risks associated
with its use must be minimized during
its deployment. In areas where P.
vivax exists, patients should be tested
for G6PD deficiency and adequately
informed before administration of
primaquine.
Chief Editor:
A. Abyad
MD, MPH, AGSF, AFCHSE
Email: aabyad@cyberia.net.lb
Ethics Editor and Publisher
Lesley Pocock
medi+WORLD International
11 Colston Avenue
Sherbrooke 3789
AUSTRALIA
Phone: +61 (3) 9005 9847
Fax: +61 (3) 9012 5857
Email:
lesleypocock@mediworld.com.au
Editorial enquiries:
aabyad@cyberia.net.lb
Advertising enquiries:
lesleypocock@mediworld.com.au
While all efforts have been made to ensure
the accuracy of the information in this
journal, opinions expressed are those of
the authors and do not necessarily reflect
the views of The Publishers, Editor or the
Editorial Board. The publishers, Editor and
Editorial Board cannot be held responsible
for errors or any consequences arising
from the use of information contained
in this journal; or the views and opinions
expressed.
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 8 ISSUE 5
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10 �
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
TABLE OF CONTENTS
Original Contribution / Clinical Investigation
4 Hysteroscopy: The Gold Standard Diagnostic and Therapeutic Tool in Gynecology. Our experience at
Queen Alia Hospital, Jordan
Abo Omar Adnan Asaad, Alqudah Mohamad Awwad
9 Measuring level of public relations in hospitals
Mohammadreza Amiresmaili, Shole Rostami, Parvaneh Isfahani
19 Family Medicine Essentials (FAME): An effort to put clinical practice guidelines into practise in
Saudi Arabia
Tarek Al- Megbil, Abdul Sattar Khan, Zekeriya Akturk, Abdulmohsen Al-Twijri, Basema Al-Khudhair
21 Continuity of Care for Iraqi Diabetics: How Important is it?
Abbas M. Rahmah, Yousif A. Husain, Berq J. Hadi
Medicine and Society
28 What do new advances in geographical sciences and technologies offer global family medicine?
Mohsen Rezaeian, Lesley Pocock
33
Impact of Work on Pattern of Breast Feeding
Modhi Fahad Alotaibi
Education and Training
45 Diagnosis and Management of Short Stature
Ayed Al Anezi, Ibrahim Al Alwan
Clinical Research and Methods
54 Clinical presentation and the outcome of cases with acute intravascular hemolysis caused by
primaquine in Yemen
Saeed Mohamed Alwan Abdullah
CME
62 Low Back Pain
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10�
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 8 ISSUE 5MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
Abstract
Objective: The purpose of our
study is to highlight the essential
role of hysteroscopy in the evalu-
ation and treatment of women
presenting with recurrent implan-
tation failure after in-vitro fertiliza-
tion, recurrent pregnancy loss,
unexplained infertility and abnor-
mal uterine bleeding.
Methods: This prospective study
was carried out in the Gynecology
Department at Queen Alia Hospi-
tal, Jordan. Patients who under-
went diagnostic or therapeutic
hysteroscopy between May 2011
and April 2012 were included in
the study. Hysteroscopic findings
and the procedures performed
were collected and analyzed using
SPSS. Numbers and percentages
were calculated and analyzed to
describe the results.
Results: Of the 379 patients
studied, 171 women (45.1%) had
intrauterine pathologic findings. In
patients with history of recurrent
implantation failure after in-vitro
fertilization, 17 (54.8%) out of 31
patients had abnormal hystero-
scopic findings. Out of 49 patients
with a history of recurrent preg-
nancy loss, 22 patients (44.9%)
had intra uterine abnormalities.
Of 54 patients with unexplained
infertility, 24 patients (44.4%) had
uterine cavity pathology and out of
245 patients with abnormal uterine
bleeding, 137 patients (55.9%) had
normal and 108 patients (44.1%)
had abnormal hysteroscopic find-
ings. One hundred and twenty two
operative hysteroscopic proce-
dures were performed. The most
common procedure was hystero-
scopic endometrial polypectomy
(38.5%).
Conclusion: Because of the high
rate of intrauterine pathology in
women with recurrent implantation
failure after in-vitro fertilization,
recurrent pregnancy loss, unex-
plained infertility and abnormal
uterine bleeding, hysteroscopy
should be considered as early as
possible in the diagnostic work-up
of these patients.
Key words: Hysteroscopy, Abnor-
mal uterine bleeding, Infertility,
Recurrent implantation failure.
Hysteroscopy: The Gold Standard Diagnostic and
Therapeutic Tool in Gynecology. Our experience at Queen
Alia Hospital, Jordan
Abo Omar Adnan Asaad (1)
Alqudah Mohamad Awwad (2)
(1) Jordanian Board, Senior Specialist Obs&Gyn
Department of Obs&Gyn, Queen Alia Hospital,
Royal Medical Services, Jordan
(2) Jordanian Board, Consultant Obs&Gyn
Department of Obs&Gyn, Queen Alia Hospital,
Royal Medical Services, Jordan
Correspondence:
Dr. Abo Omar Adnan Asaad; from the Department of Obs&Gyn,
Royal Medical Services,
Queen Alia Hospital (QAH), Jordan
Mobile: 00962-777414055
Email: dradnanjor@yahoo.com
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10 �
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
Introduction
Repeated Failure to achieve a
successful pregnancy after in-vitro
fertilization (IVF) may be explained
by many factors. These factors can
be classified into three categories:
Abnormal endometrial receptivity
(uterine cavity defects), embryonic
abnormality and a multifactorial
effect. One of the most important
factors of recurrent implantation
failure after IVF (RIF after IVF) is
undiagnosed uterine pathology. In
18-27% of women with a normal
initial hysteroscopy, repeated
hysteroscopic evaluation after RIF
discovered intrauterine pathology,
mainly endometrial hyperplasia,
fibroids, endometritis, polyps and
intrauterine adhesions (1). In the
presence of good-quality embryo
transfer and RIF after IVF, uterine
cavity is the first factor that should be
re-evaluated.
Several recent studies (2,3,4) have
demonstrated that hysteroscopy is
important and beneficial for women
developing implantation failures
after IVF. There is also significant
evidence that subsequent pregnancy
rate is improved even in RIF with
normal hysteroscopic findings, and
that just the procedure itself has a
positive prognostic role for improving
subsequent pregnancy rate (4).
Pansky et al in their study have
shown that hysteroscopy discovered
an abnormal uterine cavity in 30% of
women evaluated for either primary
or secondary unexplained infertility
and they concluded that routine
diagnostic hysteroscopy should be
part of an infertility work-up (5).
The other aspect in which
hysteroscopy can give important
information is in the evaluation of
patients presenting with recurrent
pregnancy loss (RPL). Recurrent
miscarriages are defined as the
occurrence of three or more
consecutive pregnancy losses
and it is the cause of significant
psychological and social stress for
patients, their families and doctors.
In the study by Helio et al (6), uterine
cavity abnormalities were found in
38.3% of patients with RPL.
Abnormal uterine bleeding (AUB)
is a common problem in women
attending the gynecologic clinic. It
can result in significant disturbances
of normal and healthy lifestyle.
Anatomic and structural defects of
the myometrium, endometrium, or
endocervix are frequent causes of
AUB (7). The diagnostic evaluation
of this problem should be directed
toward detecting these lesions.
However, because submucosal
or intramural fibroid, endometrial
and cervical polyps may be missed
even by the most experienced
examiners, further evaluation should
be started even if the initial pelvic
examination is normal. Hysteroscopy
is both accurate and feasible in the
diagnosis of these pathologies (8).
Formerly, the cervical dilatation and
endometrial curettage (D&C) was the
procedure of choice for assessment
of patients presenting with AUB. This
procedure obtains endometrial tissue
for histopathological assessment.
Blind exploration of the uterine
cavity, however, can miss small
but clinically important pathologic
lesions. Hysteroscopy guarantees a
high diagnostic accuracy, permitting
the simultaneous accomplishment
of directed biopsies and surgical
treatment of the visualized lesions
(9,10). In patients with AUB,
hysteroscopy provides more accurate
diagnosis of endometrial pathology
than the traditional D&C (11).
At the present time, there is a
debate related to the role of
routine hysteroscopy in sub-fertile
women prior to IVF and still there
is no conclusive evidence of its
benefit. The purpose of our study
is to highlight the essential role of
hysteroscopy in the evaluation and
treatment of women presenting with
recurrent implantation failure after in-
vitro fertilization, recurrent pregnancy
loss, unexplained infertility and
abnormal uterine bleeding.
Methods
This prospective study was of
all diagnostic and therapeutic
hysteroscopic cases which were
performed between May 2011 and
April 2012 in gynecology department
at Queen Alia Hospital (QAH)-Jordan.
Three hundred and seventy nine
patients were included in our study.
A written informed consent regarding
the procedure itself and its potential
risks and possible side effects was
obtained from all patients. The
inclusion criteria for the study were
women presenting with history of
RIF after IVF, unexplained infertility,
recurrent pregnancy loss (three
or more consecutive spontaneous
miscarriages) and women with AUB.
Recurrent spontaneous miscarriages
were defined as two or more
implantation failures. AUB was
defined as bleeding that is excessive
in amount, duration, or both at
regular or irregular intervals,
intermenstrual and postmenopausal
bleeding. Patients with abnormal
or suspicious sonographic lesions
(uterine fibroids, cervical or uterine
polyps, uterine septum and
intrauterine adhesions) also were
included in the study. Each patient
underwent complete physical
and clinical assessment. Women
with severe cardiac or respiratory
diseases, active genital tract
infections, pelvic inflammatory
disease, active bleeding, cervical
cancer, and suspected pregnancy
were excluded from the study. All
hysteroscopic procedures were
performed in the operating theatre
under general anesthesia in
lithotomy position and usually as an
outpatient procedure, unless there
was a medical or surgical indication
for admission. In premenopausal
women, hysteroscopy was arranged
in the proliferative phase of the
menstrual cycle. In all cases we
used a rigid hysteroscope with 5 mm
diameter and 30 degrees view (Karl
Storz GmbH, Tutlingen, Germany)
which is the most preferable for
routine use because it permits
endoscopic examination without
cervical dilatation. Vaginoscopic,
no-touch technique was used to
insert the hysteroscope under visual
control. The intrauterine pressure
was maintained between 60-100
millimeter of mercury. Instruments
used in surgical hysteroscopic
procedures were scissors, grasping
forceps and the resectoscope from
Karl Storz, Germany. Intrauterine
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10� MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Table 1: The rates of normal and abnormal hysteroscopy findings according to indications
pathologic lesions, such as polyps,
pedunculated or submucosal fibroids,
septae and intrauterine adhesions
were planned to be treated at the
time of diagnosis with hysteroscopic
scissors and resectoscope. Any
tissues obtained by directed
biopsy or endometrial curettage
were followed by histopathologic
examination.
Results
In the present study, of 379 patients
studied, 171 women (45.1%) had
intrauterine pathologic findings. In
patients with history of RIF after IVF,
17 (54.8%) out of 31 patients had
abnormal hysteroscopy findings.
Of 54 patients with unexplained
infertility, 24 patients (44.4%) had
uterine cavity pathology. Out of 49
patients with history of RPL, 22
patients (44.9%) had intra uterine
abnormalities and out of 245 patients
with AUB, 137 patients (55.9%) had
normal and 108 patients (44.1%) had
abnormal hysteroscopy findings. The
rate of different hysteroscopy findings
according to indications and the
distribution of abnormal hysteroscopy
findings in patients presenting with
AUB in pre- and post-menopausal
women are shown in Table 1 (above).
The most common abnormal
hysteroscopy findings in patients
presenting with RIF, RPL and in
infertile women were polyps (35.3%),
Mullerian structural abnormalities
(27.2%) and uterine myomas
(33.3%), respectively as shown in
Table . In the present study, 245
patients (64.6%) were evaluated
for AUB. These patients were
categorized into premenopausal
157 (64.1%) and postmenopausal
88 (35.9%) women. The incidence
of uterine cavity pathology was
(43.3%) in premenopausal and
(45.5%) in postmenopausal
women. The most common findings
were polyps (38.2%) and fibroids
(27.9%) in premenopausal women,
endometrial atrophy (47.5%) and
endometrial hyperplasia (14%) in
postmenopausal women.
Out of 122 operative hysteroscopy
procedures performed in the study
period, 47 (38.5%) were for resection
of endometrial polyps and 45 (36.9%)
for resection of submucosal myomas.
The other surgical procedures were
intrauterine adhesiolysis (8.5%),
endometrial resection (6.6%) and
septum resection (9.8%) Table 2 (top
next page).
Discussion
Intrauterine lesions such as
submucous fibroids, endometrial
polyps, adhesions and structural
abnormalities of the Mullerian
ducts are common and may impair
fertility leading to poor reproductive
outcome, including RIF after IVF
despite good-quality embryo
transfer and recurrent spontaneous
miscarriages (6,12,13).
Only a few years ago, assessment
of the uterine cavity in patients
presenting with unexplained infertility
and in AUB in our hospital was
carried out using traditional methods;
hysterosalpinography and D&C.
Recently, with advancement in
sonography and introduction of
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
hysteroscopic technologies, the
diagnostic approach has changed.
Hysteroscopy allows not only direct
visualization, but also treatment
of the cervical and uterine cavity
pathologies. It has been strongly
suggested that all patients with RIF
after IVF should undergo evaluation
of the uterine cavity before starting
any other fertilization procedures
(14,15,16). The high rate of
intrauterine pathology (54.8%) in
our patients presenting with infertility
and RIF after IVF is consistent
with results of other earlier studies
(17,18,19). Endometrial pathology
may interfere with implantation
by increasing uterine contractility,
vascular changes, enhancement of
endometrial inflammatory reaction
and increase production of growth
factors resulting in impairment
of endometrial receptivity, or in
mechanical defects leading to
unsuccessful implantation (20,21).
Uterine septum is associated with
increase in abortion rates due to
abnormal endometrial vascularity or
changes in the endometrial structure,
resulting in abnormal endometrial
tissue which may be unsuitable
for implantation and/or growth and
development of the embryos with
subsequent implantation failures or
spontaneous miscarriages.
Currently, the European Society
of Human Reproduction
(ESHRE) guidelines indicate
that diagnostic hysteroscopy is
unnecessary as a routine method
of investigation in infertile patients,
unless there is a sonographic or
hysterosalpingographic suspicious
findings (22). Nevertheless, it
was found by Shokeir et al (23)
that 26% of patients with normal
HSG findings have abnormal
hysteroscopic findings. In the
present study, the most common
abnormal hysteroscopic findings in
patients presenting with infertility an
RIF were polyps (35.3%), followed
by uterine myomas (29.4%). The
other abnormal findings were
intrauterine adhesions, structural
Mullerian abnormalities, endometrial
hyperplasia and endometrial atrophy.
Our results are in agreement
with the study by Larusso et al
(24), who showed that abnormal
hysteroscopic pathologies were
present in (40.6%) of patients with
infertility and RIF after IVF. The most
common findings were endometrial
and cervical polyps. They concluded
that diagnostic and therapeutic
hysteroscopy have a significant role
in the evaluation and treatment of
these patients and they suggested
introducing hysteroscopy as a routine
part of investigation work-up. In
2009, Makrakis et al (2) and Rama
et al (15) found that correction of
abnormal hysteroscopic pathologies
resulted in significant improvement in
pregnancy rates in subsequent IVF
cycles.
Our study has stressed the role
of hysteroscopy in evaluation and
treatment of patients presenting with
AUB. Of the abnormal hysteroscopy
findings in these patients, the most
common were polyps (38.2%)
and uterine fibroids (27.9%) in
premenopausal women, endometrial
atrophy (47.5%) and hyperplasia
(14%) in postmenopausal women.
Until recent times, in our hospital,
traditional blind D&C was used to
evaluate patients presenting with
AUB. In fact, this method detects
the uterine cavity pathologies in
less than 40% of the cases. Since
the introduction of hysteroscopy
in our hospital, this technique has
almost replaced the blind curettage.
Hysteroscopy is a minimally invasive
and simple method by which the
cervix and uterine cavity can be
examined under direct vision. It
provides immediate diagnosis,
directed biopsy of the suspected area
and prompt treatment. At present,
office hysteroscopy can be performed
as an outpatient procedure without
any anesthesia or analgesia.
Unfortunately, we don’t have the
suitable instruments to perform this
procedure in the gynecologic office.
In our study, all diagnostic and
operative hysteroscopic procedures
were performed in the operating
theatre under general anesthesia.
During the study period, 122
operative hysteroscopic procedures
were performed. The commonest
was endometrial polyp resection
(38.5%), and myoma resection
(36.9%). Other procedures were
septum resection, endometrial
resection/ablation and adhesiolysis.
Hysteroscopic adhesiolysis for
intrauterine adhesions constituted
(8.2%) of all surgical procedures
performed. Before the introduction
Table 2: Operative hysteroscopy
procedures described as numbers and
percentages
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
of hysteroscopy, treatment was by
an attempt to introduce a sound
or curette blindly into the uterine
cavity to disrupt the adhesions. At
present, the use of hysteroscopy for
diagnosis and treatment of uterine
synechiae has been shown to be
accurate, safe and effective. It is the
preferred method for the treatment of
uterine septum, endometrial polyps
and uterine myomas. Resection of
such lesions may enhance fertility,
improve subsequent pregnancy
rate and reproductive performance
(2,23,24).
Hysteroscopy is the gold standard
method for evaluation of the
cervix and uterine cavity. It allows
direct visualization of uterine
cavity, identifies the nature, size
and location of any intrauterine
abnormalities, such as, myomas,
polyps, Mullerian structural defects
and intrauterine adhesions. It
also permits directed biopsies
and correction of uterine cavity
pathologies.
Conclusion
Because of the high rate of
intrauterine pathology in women with
recurrent implantation failure after in-
vitro fertilization, recurrent pregnancy
loss, unexplained infertility and
abnormal uterine bleeding,
hysteroscopy should be considered
early in the diagnostic work-up of
these patients.
References
1. Demirol A, Gurgan T. Effect of
treatment of intrauterine pathologies
with office hysteroscopy in patients
with recurrent IVF failure. Reprod
Biomed 2004; 8: 590-594.
2. Makrakis E, Hassiakos D, Stathis
D, et al. Hysteroscopy in women
with implantation failures after in
vitro fertilization: findings and effect
on subsequent pregnancy rates. J
Minim Invasive Gynecol 2009; 16:
181-187.
3. Bosteels J, Weyers S, Puttemans
P, et al. The effectiveness of
hysteroscopy in improving pregnancy
rates in subfertile women without
other gynecological symptoms:
a systemic review. Hum Reprod
Update 2010; 16: 1-11.
4. El-Toukhy T, Sunkara SK,
Coomarasamy A, et al. Outpatient
hysteroscopy and subsequent IVF
cycle outcome: a systemic review
and meta-analysis. Reprod Biomed
2008; 712-719.
5. Pansky M, Feingold M, Sagi R,
et al. Diagnostic Hysteroscopy as
a Primary Tool in a Basic Infertility
Work-up. JSLS 2008; 10(2): 231-
235.
6. Helio A, Guimaraes F,
Rosiane M, et al. Comparison
of hysterosalpingography,
hysterosonography in evaluation of
the uterine cavity in patients with
recurrent pregnancy losses. Gynecol
Obstet 2006; 274: 248-288.
7. Jyostana KM, Sudha S. Role
of hysteroscopy and laparoscopy
in evaluation of abnormal uterine
bleeding. JK Science 2004; 6(1):12-
15.
8. Dongen HV, Kroon CD, Jacobi
CE, et al. Diagnostic hysteroscopy
in abnormal uterine bleeding: a
systemic review and meta-analysis.
Int J Obs&Gyn 2007; 14(6):664-675.
9. Rocha AA. The efficacy of
hysteroscopy in diagnosis and
treatment of endometrial pathology.
Gynecol Surg 2012; 9:47-52.
10. Tinelli R, Tinelli F, Cicinelli E, et
al. The role of hysteroscopy with eye-
directed biopsy in postmenopausal
women with uterine bleeding and
endometrial atrophy. Menopause
2008; 15(4): 737-742.
11. Sheetal GP, Bhute SB, Inamdar
SA, et al. Role of diagnostic
hysteroscopy in abnormal uterine
bleeding and its historathologic
correlation. J Gynecol Endosc &
Surg 2009; 1(2):98-104.
12. Yanihara A, Yorimitsu T,
Motoyama H, et al. Location of
endometrial polyp and pregnancy
rate in infertility patients. Fertil Steril
2008; 90: 180-182.
13. Klatsky PC, Tran ND, Caughey
AB, et al. Fibroids and reproductive
outcomes: a systemic literature
review from conception to delivery.
Am J Obstet Gynaecol 2008; 198:
357-366.
14. Soheila A, Haleh S, Amir HZ, et
al. Repeated IVF/ICSI-ET failures
and impact of hysteroscopy. Iranian J
of Reprod Med 2008; 6(1): 19-24.
15. Rama GA, Shashi GK, Krishna
KM, et al. Assessment of uterine
cavity by hysteroscopy in assisted
reproduction programme and its
influence on pregnancy outcome.
Gynecol Obstet 2006; 274: 160-164.
16. Nandita P, Pai H, Suehita P. Role
of hysteroscopy prior to assisted
reproductive techniques. J Gynecol
Endos Surg 2009; 1(1): 27-30.
17. Mojghan B, Mahvash Z, Sara M,
et al. Office hysteroscopy in infertility.
Inter J Fertility Sterility 2009; 3(1):
17-20.
18. Bozdag G, Aksan G, Esinler
I, et al. What is the role of office
hysteroscopy in women with failed
IVF cycles? Reprod Biomed 2008;
17:410-415.
19. Oliveira FG, Abdel VG, Diamond
MO, et al. Uterine cavity findings
in patients undergoing IVF/ET who
repeatedly cannot conceive. Fertil
Steril 2003; 80: 1371-1375.
20. Home A, Critchey H. The
effects of uterine fibroids on embryo
implantation. Semin Reprod Med
2007; 25: 483-490.
21. Khaund A, Lumsden MA. Impact
of fibroids on reproductive function.
Best pact Res Clin Obstet Gynaecol
2009; 22:749-760.
22. Crosingnani RG, Rubin BL.
Optimal use of infertility diagnostic
tests and treatments: The ESHRE
Capri Workshop Group. Hum Reprod
2000; 15: 723-732.
23. Shokeir TA, Shalon HM, El Shafi
MN. Significance of endometrial
polyps detected hysteroscopically in
infertile women. J Obstet Gynecol
2004; 30:84-90.
24. Lorusso F, Ceci O, Bettocchi S,
et al. Office hysteroscopy in an in
vitro fertilization program. Gynecol
Endocrinol 2008; 24:465-469.
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10 9MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Abstract
Introduction: Public relations is
a part of a managers’ duties in
every organization and is a con-
tinuous and programmed action
through which people and organi-
zations try to obtain the agree-
ment and support of those they
work with. Recognizing level of
public relations is of great impor-
tance because it plays an impor-
tant role in improving efficiency
of organizations and even organi-
zational consequences.
Objective: The aim of this re-
search was to determine level of
public relations in hospitals.
Method: Present descriptive-ana-
lytical study was performed cross
sectional. A questionnaire was
used for data collection. Samples
consisted of patients hospital-
ized in Zarand hospitals; all were
selected using simple random
sampling. Data was analyzed
using one sample t test through
SPSS.
Results: The studied hospitals
performance regarding public re-
lations was higher than average.
Most subjects were more than
40 years old and were married
(65.5%); some were contractual
employees (41.5%). Mean and
standard deviation of hospitaliza-
tion period was 3.46+-2.25 days.
Conclusions: The average aspect
of public relations was medium.
According to findings of this
study, several factors decreased
the level of public relations and
the image of hospital; recognizing
these factors can increase public
relations in hospitals.
Keywords: public relations, hos-
pital, relations.
Measuring level of public relations in hospitals
Mohammadreza Amiresmaili (1)
Shole Rostami (2)
Parvaneh Isfahani (3)
(1) Assistant Professor, Research center for Health Services management, Kerman
University of Medical Sciences Research Center in Health Services Administration, Iran
(2) BSc, Students ‘ Research committee, Kerman University of Medical Sciences
(3) Msc Student, Medical informatics Research center, Kerman University of Medical
Sciences
Correspondence:
P. Isfahani,
Medical informatics research center, Kerman University of Medical Sciences, Iran
Tel: 03413205154
Fax: 03413205221
Email: 891666001@collgian.kmu.ac.ir; p.isfehani@gmail.com
Introduction
Interaction with clients inside and
outside the organization is necessary
for keeping dynamics and survival of
that organization as well as obtaining
the objectives of organizations.
Mutual understanding of clients
plays an important role in improving
processes, removing shortcomings
and strengthening weak points of
every organization.[1] In today’s
communication and information
era where societies are moving
towards evolution and civilization,
public relations has appeared to
be known as the main element and
component of communication and
as an important factor in establishing
subjective and objective partnerships
due to the communicative and
interactive nature of organizations
and organizational duties and
activities.[2] Public relations is a
mutual and informed attempt which
organizations and the relevant social
groups make to meet society’s
acceptable objectives through
communication and reaching a
common understanding among
communication parties.[3] Public
relations has been perceived as
a marketing supportive technique
and industry.[4] One of the best
descriptions for public relations is
that “Public relations is managing
communications among social
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
groups and organizations”.[5] In
fact, public relations is in charge of
establishing communications with the
heart of an organization and its main
shareholders; thus, it is a guiding
performance which, in its highest
point, relates to the management and
applies tactical tools to execute the
described guidelines. Some people
believe that public relations helps
an organization and its clients adapt
each other mutually.[6] Organizations
can survive without public relations
but those organizations that use
public relations effectively can
find it easier to sell their products,
employ new employees, keep their
employees and deal with providers.
Good and correct public relations
causes a product to be perceived
positively which in turn encourages
the market to obtain that product,
causes customers to value it more
(support its price) and encourage
them to introduce it to their friends.[7]
Dimensions of public relations are as
follows:
Mutual control: level of agreement
on who has the real power to affect
others. However, a little imbalance
is normal. In order for organizations
and people to have some control
over each other, stable relations are
necessary.
Merit: believing the fact that an
organization is able to do what it has
said.
Satisfaction: a level of desirable
situation which a person feels in
every section.
Liability: the amount of energy each
person should spend to establish his
communications in order to improve
and survive.
Mutual relations: in mutual relations,
a person benefits others only due to
the fact that they have done it before
or they are going to do it in future.
Trust: believing the fact that an
organization is relatively good.
Dependency: believing the fact that
an organization will do whatever it
says.
Relation: in mutual relations, both
parties benefit each other because
they are concerned with welfare and
comfort of each other (even when
they receive nothing in return for their
work).[8]
One of the duties of public
relations is to continuously improve
recognition and importance of
hospitals in the society and to
observe them. A lot of factors
decrease public relations and image
of hospital and thus cause people to
complain. The following are the ways
of perceiving level of public relations
in hospitals: study the patients’
satisfaction level, determining the
opinion of most clients, determining
the number of received complaints,
determining scope of society
voluntary attempts, determining level
of medical employees’ substitution,
determining adaptation level of care
providers to patients, determining
the amount of hospital received
gifts, determining patients’ refusal
of physicians’ prescriptions.[9]
Establishing communications and
transferring messages constitute
the central core and main part of
public relations activities. Public
relations authorities should definitely
recognize communicative canals
and tools available in the society and
should be completely aware of their
performances.[10]
In a study carried out by Childers
Hon Linda et al entitled “Guidelines
to measure public relations in
General Steel, Red Crescent,
Microsoft, Social Security and
National Rifle Association” showed
that the mutual relations was high
in all the studied companies (more
than 5.4); level of trust, mutual
control, liability and satisfaction
were medium (3-5.4).[8] In another
study carried out by Sterne et al
entitled “ study the public relations
in managers’ duties” it was shown
that 57% of respondents announced
that “public relations provides
marketing with some information;
public relations is followed by good
results which support production
and which improve company goods;
and good public relations is clear
communication which embraces trust
and acceptable structures beyond
time.”[11]
Concerning the role of public
relations in improving efficiency and
productivity of hospitals, this study
was carried out to determine the level
of public relations in hospitals.
Work Method
This research is of descriptive-
analytical type which was carried
out in all hospitals of Zarand Town;
statistical universe of this research
was all patients hospitalized in the
above hospitals. To do this research,
a two-section questionnaire was
used (demographic specifications
and aspects of public relations). To
determine its content validity, the
questionnaire was given to some
university teachers. To determine
reliability, tools were given to 15
subjects within two weeks in a
preliminary study. Making use of
test-retest to determine reliability,
Cronbach’s alpha coefficient showed
0.87 for reliability. To select samples,
simple random sampling was used.
Data was analyzed using software
SPSS. To show data frequency,
descriptive statistics were used;
single-sample T test was used to
measure the level of public relations
in hospitals.
Results
Results of this research showed
that most studied subjects were
females (57.15). Average age of
subjects was 34.02; 65.5% were
married and 41.5% were contractual
employees. Mean and standard
deviation of hospitalization was
3.46 +-2.25 days (Table 1 – opposite
page). 27% of subjects mentioned
that the hospital kept all its promises
and had the ability to perform all its
promises. Most of them (25%) said
that the hospital worried about the
patients’ welfare, asked the patients
to participate in decision making
processes and helped those who
had low income. Most patients (24%)
were satisfied with employees and
manager’s fair behavior. 30% of
patients announced that the hospital
guided them well. In this study, low-
income patients were more satisfied
with the hospital (p<0.05). There was
a significant relationship between
satisfaction level and personnel’s
behavior (p<0.05). 23% of patients
were satisfied with personnel’s
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Table 1: Patients’ social-demographic characteristics
Table 2: Distribution of studied units in terms of options of public relations questionnaire
behavior. 22% mentioned that
hospital wanted to maintain its
relationship with patients. The
relationship between satisfaction
level and education and marital
status of patients was not significant
statistically (P>0.05). 23% of patients
said that hospital had a tendency
to order patients. No significant
relationship was found between
mutual interaction and patients’
hospitalization duration (P>0.05).
There was a significant relationship
between hospital dependency
level and patients’ satisfaction
level (p<0.05). The relationship
between hospital merit level and
patients’ satisfaction was significant
statistically (p<0.05). Average merit
level in Imam Ali and Sina Hospitals
was 6.06 and 5.63 respectively.
Average mutual control in Imam Ali
and Sina Hospitals was 5.57 and
5.36 respectively. Average liability
in Imam Ali and Sina Hospitals
was 5.79 and 5.67 respectively.
Average satisfaction level in Imam
Ali and Sina Hospitals was 5.58
and 5.43 respectively. Average
mutual interaction in Imam Ali and
Sina Hospitals was 5.38 and 5.61
respectively. Average trust level in
Imam Ali and Sina Hospitals was
5.78 and 5.69 respectively. Average
dependency level in Imam Ali and
Sina Hospitals was 5.13 and 5.21
respectively. Average relationship
level in Imam Ali and Sina Hospitals
was 5.08 and 5.18 respectively.
Results of this study showed that
merit, relationship, dependency,
trust, mutual control, liability,
satisfaction and mutual interaction
levels were mainly more than 5.4 in
both hospitals; they also revealed
that no significant relationship was
found between these two hospitals
(P>0.05) (Table 2).
Discussion and Conclusions
According to our findings, average
studied units were medium
regarding merit, satisfaction, trust,
relationship, dependence, liability,
mutual relationship and mutual
control levels. Average dimension
of public relations was also medium
in a study carried out by Childers
Hon Linda et al. It was also shown
that studied units were desirable
regarding average mutual control
and average mutual relationship. In
a study by Childers Hon Linda et al,
it was shown that average mutual
control and mutual relationship
were desirable.[8] It can be said
that this similar situation is due to
relatively similar common objectives,
common organizational structure
and social status. Results related to
average liability level revealed that
liability was desirable, while it was
undesirable in a study by Nahrir et al;
the reason may be due to the lack of
suitable and effective manpower in
that hospital. Regarding satisfaction
level, it can be mentioned that
average satisfaction was desirable. In
a study by Nahrir et al, people were
satisfied too because patients in both
hospitals were satisfied with different
parts of the hospital.[12] Results of
average trust showed that trust was
satisfactory because both hospitals
were honest with the patients and the
subjects believed that performance
and personnel of hospitals were
relatively good. In a study by Childers
Hon Linda et al, it was also observed
that trust was satisfactory.[8] Thus, it
can be said that this similar status is
due to the fact that both hospitals are
service hospitals and that all clients
of these two hospitals are ordinary
people. Results related to average
relationship revealed that it was
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
average; thus, in patients’ viewpoints,
a complete and satisfactory
interaction hasn’t been established
between patients and personnel of
these hospitals. In a study carried
out by Childers Hon Linda et al, this
variable was satisfactory due to good
and suitable interaction between
clients and personnel. Concerning
dependency, studied units showed
an average dependency and patients
of both hospitals believed that these
two hospitals didn’t completely
perform what they had said. Results
of merit level revealed that merit
was okay in these hospitals. In a
study by Ghalje et al, level of nurses’
merit was satisfactory or more than
what it is expected to be;[13] this
may be due to similarity in similar
organizational objectives. In a study
by Mosadegh Rad et al, patients’
knowledge of their rights was weak
and satisfaction was average.[14]
Generally speaking, a significant
relationship was observed between
patients’ knowledge of their rights
and their satisfaction. Since patients’
knowledge plays an important role
in their satisfaction level, informing
them of their rights and observing
these rights by personnel will improve
efficiency of hospital services.
According to our findings, managers
must recognize and strengthen
effective factors in improving public
relations; thus, a good management
in public relations can decrease
and even remove problems of
the organization and can reduce
environmental pressures imposed
on the organization. It can also
modify organizational behavior,
increase organizational integration
and minimize management decision-
making burden. Generally, if
organization management supports
public relations and if public relations
management is qualified enough, it
can increase organizational success.
Patients’ mental and physical status
while answering the questions was
one of the limitations of this research
which can affect the general results.
Some suggestions to improve
public relations in hospitals:
– making use of the internet by
employees and managers and
using articles to apply new
techniques of public relations
– installing patients’ law charter in
various parts of hospital and training
patients
– employing patient personnel in
reception, discharge and
emergency sections where patients
and personnel most visit
– activating criticism and suggestion
box
– focusing on group training rather
than individual training
– encouraging employees to
participate in group activities
– starting up the patients’ relations
management unit in hospitals or
activating the existing units
– improving employees’ information,
knowledge and communicative
skills
– improving audio-lingual and
perceptive skills to establish better
communications
– practicing audio-lingual and
perceptive skills to establish better
communications
References
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Public Relations: History, Principles,
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3- Hyoid, Roger, (2007), everything
about public relations, Translators:
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Ledingham (1999), Development
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Prominent professional public
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James, (1999), Guidelines for
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Montazari, Sargol Press, Tehran
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Relations among the functions
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Perspective, Public Relations Journal
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Tofighi Shahram, Karimizarchi
Aliakbar, Honarvar Hassan (2010),
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13- Ghalje Mahnaz, Ghaljaei
Fereshte, Mazloum Alireza (1998),
Correlation between nurses’ clinical
merit and patients’ satisfaction with
nursing services, Shahid Beheshti
Nursing & Midwifery Publication
14- Mosadeghrad Alimohammad
(2003), study the relationship
between level of patients’ knowledge
of patient’s right in hospital and their
satisfaction with hospital services Teb
Va Tazkiye Magazine
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Abstract
Though there are many continu-
ing medical education activities
presently taking place in Saudi
Arabia, a centrally organized
training course, prepared and
presented by certified family
physicians, should be developed.
The training should cover es-
sential knowledge, attitudes, and
skills that are vital for general
physicians to improve health out-
comes in their practices accord-
ing to evidence-based medicine.
This paper presents the planning
phase of a course for general
physicians in Saudi Arabia named
FAME (Family Medicine Essen-
tials), which is an effort to have
a structured and standardized
evidence-based course.
The FAME course includes seven
modules and each module is car-
ried out in three days. It is de-
signed to give knowledge, change
attitudes, and improve skills in a
few main areas of family medicine
based on either international
or national established clinical
practice guidelines. As a distinct
approach, this course is highly
learner-oriented and each speci-
fied area starts with a lecture and
continues with group work, case
discussions, role-playing, and
other interactive learning activi-
ties.
The overall impact can be as-
sessed by pre-implementation
and post-implementation assess-
ment; however, individuals can be
assessed by pre and post-tests
at the beginning and end of each
module. The FAME course is an
effort to put preferably national,
but also international, clinical
guidelines into practice through
a well structured and standard-
ized training program based on
evidence-based medicine.
Keywords: Postgraduate Train-
ing; Family physicians; Clini-
cal guidelines; Evidence-based
medicine; General practitioners;
Saudi Arabia
Family Medicine Essentials (FAME): An effort to put clinical
practice guidelines into practise in Saudi Arabia
Tarek Al- Megbil (1)
Abdul Sattar Khan (2)
Zekeriya Akturk (2)
Abdulmohsen Al-Twijri (1)
Basema Al-Khudhair (1)
(1) Centre for Postgraduate Studies in Family Medicine,
Ministry of Health, Riyadh, Saudi Arabia.
(2) Family Medicine Department, Faculty of Medicine,
Ataturk University, Erzurum, Turkey
Correspondence:
Dr. Abdul Sattar Khan
Assistant Professor,
Family Medicine Department
Ataturk University, Erzurum,Turkey
Email: drsattarkhan@gmail.com; abdulsattar@atauni.edu.tr
Introduction
Primary Care (PC) centers have
a central role in the Saudi health
strategy. Rural as well as urban
areas are equipped with PC health
centers with patient loads of around
21.5 physicians per 10,000 patients.
In total, 2037 primary health
care units (Table 1) are currently
operating in the Kingdom of Saudi
Arabia (KSA) and on an average
2-5 doctors are posted in each
centre [1]. There is a shortage of
general practitioners (GPs) leading
to a search for ways to address the
need. Compared with international
standards, the average consultation
time is low (around 5 minutes) (1). In
addition, only a small proportion of
medical students are choosing family
medicine as a specialty [3], which
indicates that the current drastic
shortage of trained Saudi primary
health care physicians will continue,
leading to the further influx of foreign
doctors with different educational
backgrounds and standards.
On the other hand, there is a great
influx of immigrants to Saudi Arabia.
Nearly 100,000 foreign citizens enter
the country each year [4]. Of course,
this movement is increasing the
diversity of the population, including
that of the doctors working in primary
care settings. For example, out of
a total of 2704 physicians in the
Riyadh region, only 21.8% were
Saudi in 1998. (The nationwide ratio
of non-Saudi to Saudi doctors was
5.25.) [5].
There are significant differences
among the practices of PC
doctors [6]. Although one study
demonstrated that around 90%
of primary care physicians are
willing to perform periodical health
screenings [6], the real figures
are disappointing: according to
another study [7], only one third of
doctors know the correct definition
of hypertension, 42% know the
prevalence of hypertension, and only
57% know the major complications
of hypertension. Only 56% of doctors
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10�� MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Health Resources. Kingdom of Saudi Arabia Ministry of
Health 2008 available from: URL: http://www.moh.gov.
sa/statistics/s2008/2008.html [1].
Table 1: Primary health care units in Saudi Arabia
would actually screen patients above 35 years of age for
hypertension. Even the referral system has problems,
both from the hospital specialist as well as the GP’s
perspective. The majority of referral letters from the GP
lack commonly accepted standards of information about
the patient, while only 23% receive feedback from the
hospital specialist [8]. PC physicians’ deficiencies include
the theoretical basis of the discipline as well as clinical
knowledge [9], skills, and recording and reporting of
diseases [10].
Evidence-based medicine (EBM) is a style of practice
in which doctors manage problems by reference to
valid and relevant information. Unfortunately, research
consistently has shown that clinical decisions rarely are
based on the best available evidence. Since primary
care is the essential foundation of effective health care
systems, it follows that providing evidence-based primary
care would reflect positively on the community’s health.
[11]
Nevertheless, caution about the potential for misuse
of EBM has been voiced by GPs based on the
biopsychosocial model of general practice and concerns
about the limited utility of largely biomedical evidence to
general practice [12].
Thus there is an urgent need to develop a standardized
course for GPs that fulfills all the requirements of
GPs’ role [13] as well as guide them in how to apply
standardized care through recommended international
and national guidelines. The FAME course is an effort to
fulfill all these requirements and started in 2008 and so
far four rounds have been completed in 2011.
Aims of the Course
By the end of the course, participants are expected to
improve their knowledge, skills, and attitudes regarding
the definition and basic principles of family medicine,
the approaches of primary care physicians in managing
diseases, and basic methods of communicating with the
patient. Attention is given to the most important clinical
problems and situations that general practitioners face in
their daily life. Concrete information accumulation, which
will be usable right after the course during daily clinical
practice, is aimed in the management principles of most
common problems.
Methods of Implementation
Teaching approach
The course is mainly constructed to enable interactive
learning with opportunities for peer learning, self-directed
learning, and brainstorming, small and large group
discussions, and didactic lecturing with audiovisual
support, as well as problem based approaches. Group
discussions, role-plays, and case discussions will be
used to facilitate behavioral changes.
Participants
This course is developed for GPs. All GPs working in the
KSA are eligible to attend this course depending on their
workload.
Trainers
The course trainers will be qualified staff from the
postgraduate training centers. The management
according to need may add additional trainers from the
field. All trainers are experienced and board certified
family physicians assigned by the Ministry of Health who
have received a certificate of attending an orientation
course on the FAME program (conducted by the Center
of Postgraduate Studies in Family Medicine, Riyadh). In
addition, they also need to attend a Training of Trainers
workshop for refreshing of their trainings and to maintain
the standards of the course.
Structure of the Course
This course consists of presentations, group work, role-
plays, and case studies performed over 21 teaching days
organized into seven modules (Figure 1 – opposite page).
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Figure 1:
Topics of seven
Modules
There is 18 hours total teaching
activity with additional study
expected to be done during the
lunch breaks and at home for each
module. The course is designed to
present theoretical information on
some main areas of family medicine
including the definition and scope
of family medicine, communication
skills, consultation and referral,
and the clinical method in family
medicine. Each specified area
starts with a lecture and continues
with group work, discussions, and
other interactive learning activities.
The course is designed to take
the learners beyond theoretical
knowledge to concrete and practical
information, which they can directly
apply at work based on the national
and international practice guidelines
(Table 2 – next page). The main
structure of the course is learning
in small groups supported by short
didactic lectures. The approximate
division of the total learning time is
as follows: 60% interactive sessions,
30% didactic lecturing, and 10% self-
directed learning.
Learning environment
A good learning environment will
be established for the trainees from
physical, organizational, as well as
communicative, perspectives. Air
conditioning of the rooms will be
available with suitable ventilation
and lighting. A comfortable U-shaped
seating plan is suggested, but it is
flexible according to the learners’
needs and resources. Water and
other drinks will be provided during
the breaks. A warm atmosphere will
be established between the trainers
and trainees where everybody can
express themselves, without any
concern about the content of their
ideas or the correctness of their
thoughts. Gender, religious, and
national identities, as well as other
human variations will be welcomed
without discrimination. The course
will not be used at any way for
purposes that might cause any
conflicts with the trainee and his/her
organization.
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10�� MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
Table 2: Clinical guidelines used in FAME
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Evaluation methods
Course Evaluation
The learners using course-rating
scales will evaluate each session
of the course. Oral feedback will be
collected from the learners at the
end of the third day. Each trainer
will prepare a personal report on the
course mentioning possible areas
to be improved. With the guidance
of these reports, the course leader
will prepare a final report for the
course. Overall impact will be judged
by a pre-implementation and post-
implementation test and compared
with a control group of matched
general physicians from different
areas.
Learner Evaluation
Learner evaluation will depend
on the participation in the course.
Learners are required to attend
90% of the sessions. It is not
possible to repeat the course for
non-attendees, and they will not
receive the course certificate.
However, they can apply to future
courses. Formative evaluations will
be performed continuously during
the course modules. Each module
also has a pre- and post-test for each
participant. After every other module,
the participants have to submit an
assignment in order to earn the
completion certificate for the full
course.
CME Credit and Course Certificate
The Ministry of Health is responsible
for the granting of CME credits and
the course certificate. The course
outline will be sent to the Saudi
Commission for Health Specialties for
approval and accreditation of CME
credits. Successful participants will
receive for each module their “course
participation certificates”. Those who
participate in all seven modules of
the FAME courses will receive the
“Basic Family Medicine Training
Certificate”.
Discussion
In a modern health care system,
professionals should provide primary
health care services with specific
education in this area. Hence, family
medicine / general practice has
been established in all developed
countries as a separate discipline.
Although the development of family
medicine is strongly supported
in the KSA, the current context
does not allow primary health care
services to be provided by family
medicine specialists and overall
the health system is run by general
practitioners (GPs). It is not possible
to fill the need for qualified family
physicians quickly enough so the
most reasonable way to contribute to
the knowledge, skills, and attitudes
of general practitioners (GPs) within
these constraints is by performing
regular continuous professional
development (CPD) activities [14].
In order to implement Evidence
Based Medicine (EBM) in routine
general practice, an integrated
approach on different levels needs to
be developed [15]. There are several
efforts to improve the qualifications
of general practitioners (GPs) with
the hope of promising results [16-18].
The need is actually for more than
the enhancement of the knowledge,
attitude and skills of GPs through a
single course; perhaps it might be
achieved by postgraduate training.
More current initiatives in this regard
are the development of a diploma
program for primary care and
continuous integrated courses for
PC doctors [18], but again it is a full
time 14-month course. In fact, the
recommendation of the European
Council seems to be more suitable,
which says, “Receiving high quality
health care is the fundamental right
of every individual” [19] and this
can only be achieved by vocational
training for GPs that incorporates
evidence based medicine.
The literature shows that there are
many barriers to practicing EBM
reported by physicians, and the lack
of training in EBM (72.9%) is one of
the major barriers [20]. Under the
umbrella of the Ministry of Health, the
General Supervisor of Postgraduate
Centers of Family Medicine in Saudi
Arabia sensed the responsibility to
perform some CPD activities, which
ultimately motivate the GPs to apply
the practice guidelines in their day-
to-day practice. This course is one
of the series of courses planned to
cover the learning needs of primary
care physicians in the KSA, and
it is an attempt to cover almost all
aspects of family medicine and
give more detailed emphasis to the
concepts of the biopsychosocial
approach in family medicine and
clinical areas in primary care.
It is well known that adult learners
have different needs than children
[21] and even that each learner
can have his/her own learning
preferences [22]. Therefore, the
major principles of this course
are assisting GPs to use their
experiences and learn in a more
independent atmosphere and
incorporate the widest variety
of learning methods possible.
Opportunities will be provided for the
reinforcement of the learning. The
trainers will be encouraged to apply
the content learned and make contact
with the training team whenever
necessary. Continuous support
will be promised and provided
whenever necessary and possible.
A mentorship will be developed and
trainees will have opportunities to
be in touch with trainers and try to
update and maintain the continuity
by submitting their assignments and
getting feedback.
According to the study on the
obstacles to Evidence-Based
Practice (EBP) experienced by
Belgian Dutch-speaking psychiatrists
using grounded theory approach,
there were three major obstacles:
characteristics of evidence;
characteristics of other partners
in mental health care including
government, patients and drug
companies; discipline-related
barriers including the complexity of
diagnoses, the importance of the
therapeutic relationship and personal
experience [23]. In a questionnaire
study out of all 650 Primary Health
Care Patients practicing at the
Ministry of Health Primary Health
Care Centers in Riyadh region, Saudi
Arabia, respondents in the study
thought that the most appropriate
way to move towards EBM was by
learning the skills of EBM (43%),
followed by using evidence-based
guidelines developed by colleagues
(37%) [24], which still gives hope to
enhance the evidence-based practice
in the family setting.
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Putting evidence into practice and
implementing clinical guidelines
depends upon more than
practitioners’ motivation. There
are factors in the local context, for
example, culture and leadership,
evaluation, and feedback on
performance and facilitation, that are
likely to be equally influential. [25].
The FAME program is at least trying
to rectify problems such as training
and continuous application for
implementation of EBM.
This course is not only developed
to give the benefit to family
physicians; but also through this
kind of course, we expect each
stakeholder will benefit. Since the
program includes trainees, trainers,
regional supervisors, administrators,
and policy makers, we anticipate
that it would be advantageous for
all. It is clear that all parties are
aware of the importance of a well
trained, standardized, and sufficient
workforce in primary care to provide
the highest quality health care to the
public in a cost effective manner.
There is a long way to go with
broad objectives, but it is important
to start somewhere. This is a long
walk, necessitating decades of
planning with consideration of the
learning curricula, teaching teams,
collaborating centers for hospital
training, monetary and other
resources, as well as firm, sustained,
and determined political support. In
conclusion, the FAME courses will
establish a well-structured training
facility for GPs enabling them to
become a standardized and high
quality physician workforce in primary
care.
Acknowledgements
The Ministry of Health, Saudi Arabia,
sponsors the whole course.
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
50. Al-Moamary MS, Al-Hajjaj MS,
Idrees MM, Zeitouni MO, Alanezi
MO, Al- Jahdali HH, Al Dabbagh M.
The Saudi Initiative for asthma. Ann
Thorac Med 2009; 4:216-33
51. Ministry of Health: Protocol for
antenatal care [Internet]. Primary
Health care department, Riyadh
[updated April 2011, cited July 2011].
Available from: http://www.moh.gov.
sa
52. Ministry of Health: Protocol for
well baby care [Internet]. Primary
Health care department, Riyadh
[updated April 2011, cited July 2011].
Available from: http://www.moh.gov.
sa
53. Saudi Society for hypertension:
Saudi Hypertension Management
Guidelines [Internet]. King Fahd
National Library Cataloguing-in-
Publication Data [updated 2011, cited
July 2011]. Available from: http://
www.saudihtn.org
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Abstract
Background and Objectives:
Continuity of care has a specific
potential to improve quality care
outcomes for persons experienc-
ing chronic diseases. Neverthe-
less, studies have shown conflict-
ing data regarding diabetes. This
study aimed to identify patients
who experience continuity with a
physician in Iraqi National Diabe-
tes Center (INDC) and to deter-
mine its contributory factors, and
outcomes.
Method: A cross-sectional study
was conducted on 400 diabetics
attending INDC. The sampling
method was carried out by sys-
tematic randomization technique.
A semi-structured interview guide
was used to collect information
from participants. All variables
were obtained through patients’
self-report.
Result: The percentage of patients
who had a personal doctor in
INDC was 70.2%. They were more
likely to be males, have higher
education, and longer duration of
diabetes; while being widowed or
divorced was associated with low-
er probability. Patients reported
better glycemic control and adher-
ence to follow-up appointments
as they had a personal doctor. No
significant association was found
between continuity and patients’
satisfaction.
Conclusion: The findings of this
study support the findings of pre-
vious studies in highlighting the
importance and role of interper-
sonal continuity in diabetes care.
Policy makers need to develop
and activate programs to improve
continuity of care between diabet-
ics and their clinicians.
Keywords: Continuity of Care,
Diabetes Mellitus, Doctor-Patient
Relationship, Quality of Care
Continuity of Care for Iraqi Diabetics: How Important is it?
Abbas M. Rahmah
Yousif A. Husain
Berq J. Hadi
Department of Internal Medicine,
Iraqi National Diabetes Center,
University of Mustansiriyah, Baghdad, Iraq
Correspondence:
Dr. Abbas Mahdi Rahmah
Consultant Endocrinologist, FRCP (Edin)
Director of Iraqi National Diabetes Center
Tel +964(790)1435542
Baghdad, Iraq
Email: abbasrahmah@gmail.com
Introduction
Diabetes mellitus (DM) is a common
and rapidly growing chronic
disease[1]. People with diabetes are
at increased risk of microvascular
(retinopathy, nephropathy, and
neuropathy) and macrovascular
(atherosclerotic) complications[2].
High-quality medical care has been
shown to reduce these complications
[3, 4]. The American Diabetes
Association has recommended
monitoring diabetes and its
complications through the use of
periodic tests as well as appropriate
management once complications
are identified[5]. However, current
data suggest that, even in developed
countries, many diabetics do not
receive optimal-quality health care[6-
8], and satisfactory outcomes are
rarely achieved[9].
Achievement treatment goals for
diabetes mellitus require close
cooperation among the patient, the
physician, and other members of the
diabetes care team during the long
course of diabetic illness[10]. This
process corresponds closely with the
concept of continuity of care (COC)
that is defined by the American
Academy of Family Physicians as
“the process by which the patient
and the physician are cooperatively
involved in ongoing health care
management toward the goal of
high quality, cost-effective medical
care”[11]. That a considerable
proportion of diabetic patients do
not receive the recommended
care and are at increased risk
of developing complications of
diabetes[6-9] suggests COC should
be an important element in the
management of DM.
Continuity of care has a specific
potential to improve quality care
outcomes for persons experiencing
chronic diseases[12]. These
diseases require considerable
medical management[13, 14] which
is likely to be easier when a patient
is cared for by the same provider, as
that provider would be more likely
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
to know when tests are needed and
treatment changes are indicated. The
influencing factors and benefits of
continuity have been analyzed and
registered individually for a number of
chronic illnesses such as asthma[15]
and hypertension[16]. Nevertheless,
studies have shown conflicting data
regarding diabetes[17-22].
Today, Iraq is undergoing
epidemiological transition with an
increase in the prevalence of chronic
non-communicable diseases like
diabetes mellitus[23]. The public
health burden and costs of such
diseases are significant and may
become a major challenge to national
development[24]. Keeping in touch
with this situation, it becomes
necessary to explore the area of
continuity in an attempt to provide
evidence that may help in dealing
with such a problem. The aim of
this study was, therefore, to identify
patients who experience COC with a
physician in Iraqi National Diabetes
Center (INDC) and to determine the
contributory factors, and outcomes of
continuity.
Method
This study was conducted on diabetic
individuals attending Iraqi National
Diabetes Center during the period
from September 2011 through to
February 2012. A cross – sectional
design with an analytic element was
used, since we were interested in
taking a general idea of patients’
experience with continuity. Ethics
approval for this research was
obtained from the Ethics Review
Board of INDC.
Sampling and Data Collection
The sampling method was carried
out by systematic randomization
technique. A sample size of 400
patients was estimated to give a
95% confidence interval of being
within 5% of the true result based on
population size.
All included subjects were patients
over the age of 18 years, having a
diagnosis of diabetes in their medical
records, on medical treatment for
DM, and registered in the center
from more than one year. Patients
were excluded if they had gestational
diabetes, or having less than 2 visits
within a year from the study because
measures related to continuity cannot
be assessed precisely for them.
A semi-structured interview guide
was designed and used to facilitate
gathering of information from
participants. The study instrument
was piloted on different patients and
minor revisions made. All variables
were obtained through patients’ self-
report. Verbal consent was taken
from respondents with reassurance
that data gained would be kept
confidential and not be used for other
than research objectives. Interviews
lasted for approximately half an hour.
Background information was
collected on respondents’ age,
gender, marital status, and highest
educational attainment. Other
variables obtained were related to
diabetes including type of DM and
year of diagnosis; plus information
concerning the duration, regularity,
and frequency of attending INDC.
Participants were then asked if they
have a personal doctor in the center.
Further questions examined patients’
opinions on the level of medical care
in the center and improvement in
their glycemic control.
Statistical Analysis
Data were analyzed using SPSS/18
program. Pearson Chi-square x2
tests were used for cross tabulations.
Logistic regression models were
used to estimate odds ratio (OR)
and 95% confidence interval (CI).
The response variable in the
logistic regressions was answer
for the question ‘do you have a
personal doctor’. The explanatory
variables were all treated as
categorical variables (with indicator
contrasts). Odds ratio of having a
personal doctor in all categories
of the explanatory variable were
compared with the odds in the
reference category of that variable
after adjustment for age and gender.
Results were considered statistically
significant and highly significant
at p-value less than 0.05 and 0.01
respectively.
Results
As mentioned previously, 400
patients have been recruited to
be involved in this study (Table 1
– opposite page). Respondents were
predominantly in their middle ages
(55.8%), with equal sex distribution.
Most were married (77.3%) and had
at least primary school education.
Information regarding diabetes and
relation with INDC are summarized in
Table 2. The vast majority of patients
had type 2 DM (88%) and around
two-thirds of them were diagnosed
with diabetes from less than one
decade. Most of the patients started
to attend the center in the last five
years (70.8%), and visited it regularly
(73.8%) according to follow-up
appointments. The percentage of
patients who reported having a
personal doctor in INDC was 70.2 %
(Figure 1 – page 24).
The relationship between reporting
care from a personal doctor in
INDC and patients’ characteristics
is outlined in Table 3 (page 24).
Those with a personal doctor were
less likely to be females (OR=0.576;
CI: 0.372-0.890). As compared to
those who were illiterate or semi-
illiterate; those who had primary or
intermediate schooling had 2.54
increased odds ratio (CI: 1.675-
7.504), those who had secondary
or technical schooling had 7.45
increased odds ratio (CI: 3.778-
18.900), and those who had college
or higher education had 6.28
increased odds ratio (CI: 3.091-
17.188) for having a personal
doctor. Concerning marital status
and in comparison with married
participants, being widow or divorced
was significantly associated with
lower probability of having a
personal doctor (OR=0.499; CI:
0.254-0.981), while being single
showed no difference (OR=1.233
CI: 0.519-2.929). Age factor was not
significantly associated with having a
personal doctor in INDC.
Table 4 (page 25) reveals factors
related to diabetes disease for
participants who had a personal
doctor in INDC. The duration of
diabetes mellitus showed only
some association with interpersonal
continuity. Patients with intermediate
duration (6-10 years) had a
significantly higher probability
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10 ��MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
of having a personal doctor as
compared to patients with short
duration (1-5 years) of disease
(OR=1.853; CI: 1.055-3.255), while
those with longer durations show just
an increase in the level of continuity
without significant association. Type
of DM and duration of center
attendance had no association with
having a personal doctor in INDC.
Continuity of care by patients’
outcomes is illustrated in Table 5.
Among those who had a personal
doctor, adherence to follow-up
appointments was significantly higher
as compared to those without such a
doctor (OR=2.117; CI: 1.320-3.396).
A similar high significant positive
association has been shown for
improvement in glycemic control
(OR=2.458; CI: 1.533-3.923). The
opinion of patients with medical care
offered by INDC, had no association
with interpersonal continuity.
Discussion
This study explores a previously
neglected area of concern in Iraq, the
importance of interpersonal continuity
and doctor-patient relationship in the
management of diabetes mellitus. It
reveals that, even in a health care
system in which there is no obligation
forcing individuals to attend the
same doctor, the majority of diabetics
choose to have a personal doctor.
Several factors have been identified
that influenced patients’ probability
of having a personal doctor in INDC.
Participants were more likely to have
a personal doctor if they were male,
had higher education, or longer DM
duration than others, while being
widowed or divorced was associated
with lower likelihood for having a
personal doctor. Factors like age,
DM type, and duration of center
attendance were not found to have
association. Continuity of care has led
to positive results regarding patients’
outcomes. Patients reported better
glycemic control and adherence to
follow-up appointments if they had a
personal doctor. Even for opinion with
medical care, the study has not found
a negative effect of COC on patients’
satisfaction.
Comparison with Existing Literature
The figure of 70.2% of respondents
having a personal doctor in INDC
is comparable to a previous cohort
study conducted in 19 family
practices in London [17], where 75%
of diabetics experienced continuity
during 10 months’ follow-up. It is not
clearly understood what creates a
patient’s desire for continuity. The
sustained partnership over time
between a clinician and patient is
thought to lead to a bond between
them, characterized by trust, loyalty,
and responsibility [25, 26]. This
personal relationship is even more
valued in vulnerable groups such as
patients with chronic conditions [26,
27].
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
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Cross-Tabulate Analysis
ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Figure 1:
Answers of Participants for
the Question “Do You Have a
Personal Doctor in INDC?”
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
Previous studies have shown
apparently variable results regarding
patients’ characteristics associated
with continuity. A review article
concerning COC offered by Pandhi
et al [26] has reported that continuity
was more appreciated from seniors,
females, and less educated people.
However, another recent article
presented by Pandhi and Saultz[27]
has stated that those who felt unsafe
if COC was to be disrupted were
more likely to be females with no role
for age, education or marital status.
Another study presented by Wolinsky
et al [28] has found that patients
were more likely to have continuity
if they were men, while widows and
individuals who had never married
were the least likely. Nevertheless,
these diversities could be explained
by the differences in cultural beliefs
and socioeconomic environments
encountered in each research.
Concerning the current study, it
seems that persons with higher
ability for decision making were more
likely to have a personal doctor.
The increase in the level of continuity
with increased duration of DM could
be attributed to increased probability
of vascular complications and need
for medications among diabetics over
time [2]. These issues have been
proposed to be synergetic factors
that lead to increased demand for
continuity in patients with chronic
diseases[27,29]. The non-association
of continuity with duration of INDC
attendance is consistent with the
literature[27] which suggests that
the length of relationship with a
provider, but not a place of care, was
associated with COC.
The present findings of role
of continuity in reinforcing the
adherence to follow-up appointments
are in keeping with Al-Azri beliefs[30]
which considered the adherence to
follow-up appointments as a way in
which continuity improves quality
of care. However, as our study is
cross-sectional, it becomes difficult
to determine whether adherence is a
cause or effect of continuity.
Individuals who reported positive
experiences of continuity were
traditionally known to be more
satisfied with medical care.
These observations have been
documented widely within multiple
systematic reviews concerning
continuity[12,31,32]. However, the
current study failed in proving such
an association. Although participants
were generally more satisfied with
medical care as they had a personal
doctor, findings did not give statistical
power or significance. These results
may be attributed to the general
political and security problems in Iraq
which lead to increased prevalence
of anxiety and obsession among
people as has been found during
the Iraq Mental Health Survey
(IMHS)[33].
Continuity of care is generally known
to enhance health status for people
experiencing chronic conditions,
primarily through its participation
in improvement of the quality of
care[12,34]. Regarding diabetes,
it has been found to be associated
with better glycemic control[18-
19], reduced hospitalization[20-21]
and overall mortality[20]. This has
been suggested to be mediated
by changes in patient behavior,
especially those concerning diet[19].
However, still some studies pointed
to the reverse in other aspects, like
non-association with improvement
in intermediate outcomes[17] or
completion of monitoring tests[22],
which indicate the need for more
comprehensive work in this field.
Strengths and Limitations of the
Study
To our knowledge, this is the
first study implemented in Iraq
concerning the subject of “continuity
of care” among Iraqi people. Only
one article has been found during
our search, which demonstrated the
effect of COC in the management
of wounded American soldiers
fighting in Iraq [35]. Nevertheless, the
findings of that study could not be
applied properly on Iraqi people.
Although the majority of patients
attending INDC had type 1 or 2 DM,
individuals with other metabolic
disorders still came. Such minority
groups were excluded as they did
not fulfill the criteria for participation,
e.g. duration less than one year for
gestational DM, and no necessity
for medications in impaired glucose
tolerance.
Finally, participants were recruited
from a single health care institution
which was affiliated to the academic
system. This problem may restrict
the ability to apply the findings to
patients seen in other health settings.
On the other hand, the sampling
of patients from a large outpatient
clinic population, more than 25,000
records present in the center, with
comprehensive management for
diabetes could be regarded as a
strength for the study.
Implications for Clinical Practice
and Future Research
It is good to find that so many
diabetics achieved the interpersonal
continuity, giving the positive
effects on outcomes reported by
them. However, there is still room
for improvement for others. Policy
makers must attend to the needs
of disadvantaged groups and take
steps to encourage them to obtain
the diabetic care from someone they
know and trust. Such steps could
involve minimizing complexity of
service design and operating flexible
appointment systems that permit
booking appointments in advance.
The use of mass media and health
education programs to explain the
benefits of COC is another way
forward. Scopes for further research
could involve inquiring of cause of
low continuity among specific groups,
effect of COC on cost and speed
of access to health services, and
physicians’ opinions and attitudes
towards continuity. It should be
noted that we are not advocating
‘mandatory personal care’, but we
want to enable diabetics to choose it.
Conclusion
The findings of the current study
support the findings of previous
studies in highlighting the importance
and role of interpersonal continuity
in diabetes care. Policy makers need
to develop and activate programs to
improve continuity of care between
diabetics and their clinicians.
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
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MEDICINE AND SOCIET Y
Abstract
Recent advances in geographi-
cal sciences and technologies i.e.
Geographical Information Systems
(GIS) and further development of
the Global Positioning System
(GPS), offer family doctors, public
health officers and non-govern-
ment organizations (NGOs) valu-
able tools with which to study the
‘place’ component of public health
problems, as well as areas in need
of doctors and medical facilities.
In this article we take a fresh look
at some of these geographical
sciences of relevance to family
medicine, which include: detecting
a hot spot of a given health prob-
lem, locally or regionally, and early
detection of any changes in place
or pattern of disease over time, for
better planning of responses to
these events.
Key words: Family medicine
specialty and practice, Geographi-
cal Information Systems (GIS),
Global Positioning Systems (GPS)
What do new advances in geographical sciences and
technologies offer global family medicine?
Mohsen Rezaeian (1)
Lesley Pocock (2)
(1) Epidemiologist, Professor, Social Medicine Department,
Rafsanjan Medical School, Rafsanjan University of
Medical Sciences, Rafsanjan, Iran
(2) Publisher and Managing Director,
medi+WORLD International Pty Ltd
Correspondence:
Lesley Pocock
Publisher and Managing Director
medi+WORLD International Pty Ltd
11 Colston Avenue, Sherbrooke
Victoria 3789, Australia
Phone: +613 9005 9847; Fax: +613 9012 5857;
Email: lesleypocock@mediworld.com.au
Introduction
Recent advances in geographical
sciences and technologies provide
an enhanced environment for
acquiring a greater understanding
of the relationship between health
and place, to better meet the needs
of global family doctors and their
patients (1,2,3). The present article
therefore looks at the facilities these
advancements can offer to family
medicine. Firstly it covers some
background information related
to new advances in geographical
sciences and technologies, then
it moves on to highlight those
aspects related to the place side of
public health problems that family
physicians will now be able to
better respond to, by applying these
technologies.
GIS
A Geographic Information System
(GIS), Geographical Information
System, or Geospatial Information
System is a system designed to
capture, store, manipulate, analyze,
manage, and present all types of
geographically referenced data. In
the simplest terms, GIS is the
merging of cartography, statistical
analysis, and database technology.
A GIS system digitally creates and
manipulates spatial areas that
may be jurisdictional, or purpose
or application-oriented for which a
specific GIS is developed. Therefore,
in a general sense, the term
describes any information system that
integrates, stores, edits, analyzes,
shares and displays geographic
information for informed decision
making. GIS applications are tools
that allow users to create search
criteria, analyze spatial information,
edit data, map and present the results
of all these operations.
Common applications of the
technology include: earth surface-
based scientific investigations;
resource management, reference
and projections of a geospatial
nature, both man-made and natural;
asset management and location
planning; archaeology; environmental
impact-assessment; infrastructure
assessment and development; urban
planning; cartography, criminology;
geospatial intelligence; logistics;
population and demographic studies;
prospectivity mapping; and statistical
analysis.
The tremendous potential of GIS to
benefit the health care industry is
just now beginning to be realized.
Both public and private sectors
are developing innovative ways
to harness the data integration
and spatial visualization power of
GIS. The types of companies and
organizations adopting GIS span the
health care spectrum, from public
health departments and public health
policy and research organizations,
to hospitals, medical centers, health
insurance organizations and NGOs.
(4,5)
Current medical and public
health uses include: Improved
Workplace and Worker Safety
Crisis Management; Infectious
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GPS
Figure 2: A GPS ‘satellite’
Disease Surveillance; Interagency Healthcare
Logistical Support during Emergencies;
Location-Based Hazard Vulnerability
Assessment Tools for Healthcare Facilities;
Applications for Trauma Center Siting
Healthcare Facility Disaster Planning:
Identifying Alternate Care Sites or the closest
clinic, planning for HIV/AIDS and family
planning programs and analysis of the effects
of environment on early childhood mortality,
immunization programs. Researchers are also
linking GIS with anemia prevalence data to
model estimates of malaria endemic/epidemic
and seasonality and intensity of transmission.
Left:
Figure 1: E. W. Gilbert’s version (1958)
of John Snow’s 1855 map of the Soho
cholera outbreak showing the clusters of
cholera cases in the London epidemic of
1854
The Global Positioning System (GPS) is a space-based global
navigation satellite system (GNSS) that provides location and time
information in all weather, anywhere on or near the Earth, where
there is an unobstructed line of sight to four or more GPS satellites.
A GPS receiver calculates its position by precisely timing the
signals sent by GPS satellites above the Earth. General Relativity
(GR) predicts that clocks in a stronger gravitational field will tick at
a slower rate. Special Relativity (SR) predicts that moving clocks
will appear to tick slower than non-moving ones. Remarkably, these
two effects cancel each other out for clocks located at sea level
anywhere on Earth.
As a feature of GPS is that it can be exported
into a GIS format, the potential for these
technologies to solve global health related
problems is wide and these technologies
are being used in many innovative global
health solutions such as currently tracking
the movement of drought affected people
in the Horn of Africa by the UN agencies
engaged in the current famine crisis, and
allocating personnel, medical and food supplies
accordingly. (6) High resolution imagery of
locations with pressing humanitarian needs are
being compiled and volunteers are mapping
roads, hospitals, schools, community centers,
and water resources among other vital
landmarks. The data collected is being shared
periodically with the UN agencies engaged in
the famine crisis. (7)
The capability to export to different data formats
allows maximum flexibility in handing data to
various agencies or other software platforms.
Exporting GPS data in the correct projection
and datum is the most important component of
any Export function.
The export software should also have the
capability to output in the spatial coordinate
projection and datum of the GIS.
Arguably a GIS/GPS system is most ideal
for greater health needs of populations e.g.
epidemics, famines, environmental and man-
made disasters, logging disease and outbreaks
(8).
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Figure 3: A visual example of the GPS
constellation in motion with the Earth rotating
Family physicians and global
healthcare needs
Family physicians while remaining
responsible for the care and
treatment of each person in their
local catchment area, should also
be aware of the regional and global
picture i.e. the relationship between
people and disease and its place
within the general environment (9).
Evidence suggests that most public
health problems are related to ‘place’
i.e. where a person is born, lives and
works. The concept of place is rather
more than the geographical place per
se. It might include the relationship
between people and also between
people and their environment
and between disease and the
environment. Environment is also a
rather comprehensive concept which
might also cover physical, biological,
chemical, climatological, economical
and social components (10,11,12).
This means that the health of a
person is intertwined with his or
her place on both the micro and
macro scale, in its bigger concept.
Therefore, family physicians
should not only comprehend this
vital relationship but also be able
to investigate scientifically the
relationship between health and
place. This helps to achieve a better
understanding of links between
health phenomena and environment
and to design the necessary
investigations and interventions in
order to promote the level of health in
the served communities (13).
Examples of such use may be
plotting of disease spread through
a local region to allow authorities to
better plan a response, the linking
of health department (DHS) data
with routine health data, health
facility locations, land use, local
infrastructure, and environmental
conditions.
An interesting recent enhancement of
GIS is the development of wearable
GPS devices.
Rather than rely on static areal units
as proxies for places, wearable
devices can be used to derive
a more complete picture of the
different places that influence an
individual’s wellbeing. The measures
are objective and are less subject
to biases associated with recall
of location or misclassification
of contextual attributes. This is
important for two reasons. Firstly,
it brings a dynamic perspective to
place and health research. The
influence of place on health is
dynamic in that certain places are
more or less relevant to wellbeing
as determined by the length of time
in any location and by the frequency
of activity in the location. Secondly,
GPS data can be used to assess
whether the characteristics of places
at specific times are useful to explain
variations in health and wellbeing.
An increasing number of studies
suggest that characteristics of
context, or the attributes of the
places within which we live, work
and socialize, are associated
with variations in health-related
behaviours and outcomes. The
challenge for health research is
to ensure that these places are
accurately represented spatially, and
to identify those aspects of context
that are related to variations in health
and amenable to modification. (13)
The integrated use of these new
advances, have greatly improved the
following shortcomings of studying
the place side of public health
problems:
1. Where exactly a public health
problem has occurred.
2. How can we produce a high
resolution map or other means
of conveying statistical data of
health problem events?
3. How can we spatially analyse
the relations between events
and places?
By removing the above-mentioned
shortcomings, public health
professionals, including family
physicians, are now able to answer
some of the old but important
questions related to the place side of
public health problems.
In what follows three of the
most important questions will be
discussed:
Question 1. Is there a hot spot of a
given health problem?
Hot spots of a given health problem
or disease, e.g. traffic accidents,
leukemia, suicide, dengue fever,
T.B. etc., are those places which
demonstrate a higher number or rate
of the problem that has occurred
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in a level that cannot be explained
by chance alone (2). The issue of
detecting a hot spot or a cluster of
events is among one of the most
important issues related to place
which often arise at the population
level (14,15).
Since hot spots can be investigated
in different ways according to
the nature of data we should first
recognize different types of spatial
data. Although there are different
types of data, two of them i.e.
point and count data, are the most
important since public health spatial
data usually gathers as point data
e.g. the exact location of an event
such as a suicide or traffic accident
and area data e.g. the number of
suicide cases or traffic accidents in a
given district (16).
Scholars invent different methods
of detecting types of clusters for
both point and area data using new
advances in geographical sciences
and technologies. For example, for
assessing the localized clustering in
point data the geographical analysis
machine (17) and the spatial scan
statistic (2518) were invented, while
in order to detect any global clusters
in area data, spatial autocorrelation
statistics such as Moran I statistic
(2619) and Geary’s c statistic were
developed (2720).
Question 2. Is there a change in
pattern of disease over time?
Another important question that a
family physician might come across
in his/her practice is whether there
is a change in the pattern of a given
disease or injury, over time, in a
certain place. The element of time
plays an important role in such
situations. Additional to the other two
questions in which we investigate
the place side in a rather cross
sectional domain, here we consider
a longitudinal type of study in which
a cohort is followed up over time to
see whether a change in incidence of
disease has occurred (21).
To meet this demand, new
technologies provide an environment
to design appropriate surveillance
systems to closely monitor any
changes in the pattern of the
environmental related health
problems (22) such as climate-
related health vulnerabilities (23),
surveillance of infectious disease,
especially zoonoses including rabies
(24) and monitoring any public health
impacts and consequences of natural
disasters (25).
Question 3. Where to locate a new
family physician clinic?
This is an important question
whenever a new clinic or a hospital
is to be established. The scientific
answer to this vital question is
nowadays possible using new
advances in geographical sciences
and technologies. For doing so,
evidence suggests that there are two
vital rules that should be considered,
especially within developing
countries. Firstly, the given clinic
or hospital should be placed in an
area within the district in which most
people in need live. Secondly, in that
selected area, the most appropriate
place would be a location that is
easily accessible, including by public
transport, and have the minimum
possible distance to the living places
of people in need (26, 27).
Fulfilling both requirements needs
extensive analysis, considering
so many variables, including
distance and travel time, and
using appropriate models such as
location-allocation models and new
advances in geographical sciences
and technologies have now made all
these analyses possible (28). There
are different examples in which the
investigators apply successfully
these new technologies for locating
a hospital and other health services
within communities (29,30,31) and
also to recognize geographic districts
where various people may not be
able to access suitable primary care
services (32).
Safeguards
While the advantages of combining
two such global information systems
as GPS and GIS are substantial, the
tracking of various human activities
and generating data thereon, can
also generate problems of invasion
of privacy, third party or commercial
use of the data and integrity of
those who hold the data. GPS and
similar technologies were originally
developed for purposes of warfare
so we therefore need standards and
guidelines governing the use of such
data in the same way as we already
protect the health data of patients.
Conclusion
Geographical sciences and
technologies have witnessed rapid
advances during the past four
decades. These advances herald
a new era in which the family
physician, like other public health
specialists, is able to investigate
scientifically the role of place in
human health. It helps them to better
understand the relations and links
between place and the health of
individuals, families and communities
in order to manage the existing
resources more expediently and to
implement thoughtful public health
interventions, in a timely and efficient
manner.
Evidence suggests that the gap
in health between poor and rich is
increasing everywhere and it is timely
to deal with such health inequalities
especially through primary care
(33). New advances in geographical
sciences and technologies can help
primary care specialists to determine
and respond to hot spots of health
problems which in themselves are
reflections of health inequalities. This
will allow primary care specialists
to shift existing resources to those
more needy areas, for example by
establishing new primary care clinics
in the best possible places.
Since applications of any new
technologies require additional help
from relevant professionals, family
physicians need to look for such
help in their practice areas. This
could occur either directly through
collaboration with other professionals
in searching the role of place in
health, or indirectly by taking relevant
courses and workshops to get
familiar with different applications of
these advanced technologies.
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Abstract
Objectives: To explore the pat-
tern of breastfeeding in working
and non-working mothers and the
factors specifically related to work
and breastfeeding.
Methodology: A cross-sectional
survey was carried out at well
baby clinic and employee health
clinic in King Abdulaziz Medical
City and well baby clinic at Health
Care Specialties Clinic (HCSC),
Riyadh city, Saudi Arabia, from
June to December, 2008. Nearly
200 questionnaires were filled
out by the mothers and by face to
face interview. Questions on de-
mographic data for mothers and
children, pattern of breastfeed-
ing, support from family, working
hours, maternity leave, change in
work shift, availability of lactation
room at work place were included.
Results: The non-working moth-
ers were 3.6 times more likely to
be breastfeeding their children
when compared to the working
mothers (p <.001). The working
mothers were more likely to bot-
tle-feed their child than non-work-
ing mothers and less likely to
breastfeed (p <.05). Nearly 50% of
the women were not breastfeed-
ing their infants after 7 months
of age. Over two-thirds were not
breastfeeding when the child was
between 7-18 months and only
12% continues to breastfeed after
the child was 18 months old
(p <.001). Among the working
mothers as the age of the child
goes beyond 6 months, the
breastfeeding drops from 45%
to less than 10%.(p<.002). Work-
ing mothers were less likely to
get encouragement from their
husbands to breastfeed (p <.001).
Women working 7 hours or less
were more likely to breastfeed
than those working 9 hours daily
(p .002). However if the mother
took breastfeeding breaks at
work, it helped current breastfeed-
ing (p .036). In addition, the ability
to take breastfeeding breaks was
strongly related to facilitation by
the employer (p <.001).
Conclusion: Breastfeeding is poor
in both working and non-work-
ing mothers. Work has a negative
impact on breastfeeding pattern,
however, lesser working hours,
breastfeeding breaks and sup-
port from employers may help
in restoring some breastfeeding
patterns.
Keywords: Breastfeeding, lacta-
tion, maternal employment.
Impact of Work on Pattern of Breast Feeding
Modhi Fahad Alotaibi
Correspondence:
Dr. Modhi Fahad Alotaibi
Department of Family Medicine
Riyadh, Kingdom of Saudi Arabia
Introduction
The World Health Organization
Expert Consultant Panel on the
Optimal Duration of Exclusive
Breastfeeding recommended in 2001
that infants should be exclusively
breastfed during the first 6 months
of life, instead of the previous
recommendation of 4-6 months, and
that they should continue to receive
breast milk throughout the remainder
of the first year and during the
second year of life (1, 2).
Breastfeeding confers health
advantages on the mother by
helping her regain her pre-pregnancy
weight and long-term reduction of
risks of developing ovarian cancer,
premenopausal breast cancer and
osteoporosis (3).
An Australian study in 2003 showed
that breast feeding initiation rates are
relatively high , with >80% of women
leaving the hospital breastfeeding,
but afterward fewer than half of
infants receive any breast milk at 6
months (4).
Miller and colleagues reported a
breastfeeding initiation rate of 80%
among resident physicians in 1996
in a random selection of American
graduates (5).
A study published in the Canadian
Journal of Public Health in
2003 assessed the main social
determinants in the general
population of Quebec of initiation,
duration, and exclusivity of
breastfeeding from birth to 4 months.
It found that Mother’s education level
and age were the most important
factors for initiation and duration of
breastfeeding up to 4 months. Annual
family income showed a negative
relationship with breastfeeding when
mothers’ ages and education levels
were equal (5).
The International Labor Organization
(ILO) recommends a period of
maternity leave of not less than 14
weeks. The promotion of breast-
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feeding is a global priority, because
of its many benefits to infant and
mother.
Arthur et al found a breastfeeding
initiation rate of 93% among
physician mothers living in
Mississippi, with the mean duration
of breastfeeding being 18.8 weeks
without a significant relationship
between part-time or full-time work,
length of maternity leave, and
duration of breastfeeding (6, 7).
Gielen et al have suggested that
early return to work adversely affects
initiation and continuation of breast-
feeding (8).
Another study indicated that more
flexible working conditions, including
increased opportunities for part-time
work, improved conditions at work
for breastfeeding, and breastfeeding
breaks at work, will help to support
breastfeeding among women who
work outside home (9).
Freed et al, in a US study, reported
that residents and physicians
with personal experiences of
breastfeeding were more confident
providing support and advice to
breastfeeding patients (10).
In Saudi Arabia, one study showed
that approximately 73% of the
mothers breastfeed their children
initially but only 37.6% were breast
feeding their children at the age of 6
months and the mothers’ educational
level was the most important factor
associated with mothers’ practice(11).
Another study was done to show the
pattern of breast feeding during the
first 6 months only and found that,
the higher education level of the
mothers, the more likely they would
be working. This possibly could be
the real reason behind the reduction
of lactation among the educated
women (12).
Study Objectives
1. Primary objective: To explore the
pattern of breastfeeding in working
and non-working mothers
2. Secondary objective: To
explore the reasons that influence
breastfeeding practice of mothers,
specifically related to work.
Methodology
Design:
It is a cross-sectional study design
using a survey questionnaire.
Participants:
The subjects included the mothers
who had children aged 3 years or
less, attending well baby clinic and
employee clinic in King Abdulaziz
Medical City and well baby clinic at
National Guard health specialty clinic
(HCSC).
Sample Size:
Total sample size is 200 mothers.
Setting:
The study was conducted at King
Abdulaziz Medical City, National
Guard health specialty clinic (HCSC),
Riyadh city, Saudi Arabia.
Data collection procedure
The survey form was distributed
and data was collected from June
1 to December 29, 2008. The study
was conducted by questionnaire,
which was designed based on
existing literature and validated
questionnaires from previous
research and was self-administered.
The questionnaire for the study
was prepared in English and then
translated into Arabic. Mothers were
conveniently sampled from those
randomly visiting the clinic on a daily
basis and interviewed personally
when necessary.
Data Collection Instrument
Demographic data for mothers and
children, pattern of breastfeeding,
support from family, type of delivery
and initiation of breastfeeding were
asked among the mothers (see
Appendix: Questionnaire). Special
questions for working mothers, which
included working hours, length of
maternity leave, change in work
shift, lactation breaks, presence of
lactation room at the work place
and its utilization by the mothers,
were asked. A small pilot study of 10
persons was carried out to check the
appropriateness and the clarity of the
questions.
Statistical analysis
Statistical analysis was performed
using SPSS 14. Descriptive statistics
such as frequencies, percentages
and counts of most variables in
the questionnaire were carried out.
Comparison between variables was
carried out by using Chi-square
and T-tests where applicable, and
statistical significance was assigned
at p less than 0.05.
Ethical Statement:
The research was approved by the
departmental research committee.
All data was maintained in a secure
fashion as per policy. All data was
analyzed and presented collectively
in a manner so that individual privacy
was protected.
Results
The results are arranged as follows:
1. Socio-demographic characteristics
of the mothers in the study.
2. Pattern of breastfeeding among
working and non-working mothers
3. Child factors influencing
breastfeeding patterns
4. Childbirth and breastfeeding
initiation
5. Family support regarding breast
feeding
6. Factors at work that may influence
breastfeeding
Socio-demographic characteristics
of mothers:
A total of 200 mothers participated
in the study, of which 139 (69.5%)
mothers were non-working while
61 (30.5%) mothers were working.
Table 1 gives the socio-demographic
characteristics of the mothers. Eighty-
seven percent of mothers were
Saudi. Only 26.5% of the mothers
were illiterate while 73.5% had some
form of education.
Fifty-eight of the working mothers
had education at university level,
18 of the 76 women with university
level education and above were
not working at the time of interview.
Among the non-working mothers 52
of the 139 mothers were illiterate
while 87 mothers had some form of
education, (Table 2).
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Table 1: Socio-demographic
Characteristics of the Mothers
Table 2: Education level and
Working status
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Table 3: Education Level & Mean of Age for Working and Non-working Mothers
The mean age of non-working mothers was 27.3 years while working mothers were older by 3.35 years (T-test 3.5, p-
value .001).
Age difference (4.6-6.3 years) was significant between those with secondary/intermediate education and those with
university background (p<.004). No statistically significant difference however was found between the ages of women
who were currently breastfeeding their child or not.
Pattern of breastfeeding among working & nonworking mothers:
Table 4: Relationship between Work status and Breastfeeding
As we can be seen in Table 4, the Non-working mothers were 3.6 times more likely to be breastfeeding their child
when compared to the working mothers (Chi-Sq = 13.14, p <.001) (Odds Ratio = 3.6 (CI: 1.76-7.33).
MEDICINE AND SOCIET Y
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Table 4: Relationship between Work status and Breastfeeding
As we can be seen in Table 4, the Non-working mothers were 3.6 times more likely to be breastfeeding their child
when compared to the working mothers (Chi-Sq = 13.14, p <.001) (Odds Ratio = 3.6 (CI: 1.76-7.33).
Table 5: Work status of Mother and Milk Feeding Categories
MEDICINE AND SOCIET Y
Table 5 shows that working mothers
are more likely to bottle-feed their
child than non-working mothers and
less likely to breastfeed as a way to
deliver milk to their child (Chi-Square
= 12.91, p .002). Working status of
mother had no significant effect on
use of breast pump, or child age of
starting solid food (5 months).
Nearly 50% of the women are not
breastfeeding their infant less than
7 months of age; over two-thirds are
not breastfeeding when the child
is between 7-18 months and only
12% continue to breastfeed after the
child is 18 months old (Chi-Square =
17.74, p <.0001).
There was a difference of 7 months
in the age of the child between
mothers currently breastfeeding their
children (age 6 months) with those
not breastfeeding (age 13 months),
(T-test 4.75, p <.0001).
Non-working mother Chi-Square =
3.95, P-value = 0.139
Working Mother Chi-Square = 12.26,
P-value = 0.002
On further analysis, it was shown that
there was no statistically significant
difference in the ages of children
breastfed by non-working mothers
while among the working mothers as
the age of the child goes beyond 6
months, the breastfeeding drops from
45% to less than 10%, as shown in
Table 7 (Page 39).
We noticed that, the breastfeeding
pattern among non-working mothers
remains around 50% up to 18
months of child age. It drops to
nearly 25% afterward, however
this difference is not statistically
significant. (See Figures 1 & 2 pages
38 and 40 )
As summarized in Table 8, over
75% of the women whether working
or not, had a strong intention to
breastfeed their child, however
intention did not have any statistically
significant affect on whether the
mother was currently breastfeeding
or not, irrespective of work status.
Child factors influencing
breastfeeding pattern:
Demographic characteristics of
children showed that 45% were male
while 55% were female .The majority
of children were single and full-term
and with normal delivery and without
complications, as seen in Table 9
(page 41).
Further analysis showed the
gender of child was of no statistical
significance on the current
breastfeeding patterns of mothers,
irrespective if the mother worked or
not.
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Figure 1: Working Mothers’ Breastfeeding Pattern and Child Age
MEDICINE AND SOCIET Y
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Table 6: Child Age Groups and
Mothers Breastfeeding at Present
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Child Age Large Groups * are you breastfeeding your child at present * Working mother
Table 7: Child Age Groups and Breastfeeding of Working and Non-working Mothers
Mothers with more children
were more likely to be currently
breastfeeding (Chi-Square = 15.16,
p <.001) See Table 10 – page 41.
Working mothers were more likely to
have fewer children (Chi-Square =
7.58, p .023).
Childbirth & Breastfeeding Initiation
Non-working mothers were more
likely to have normal delivery as
compared to working women who
had a higher C-section rate (Chi-sq
23.7, p <.001) (OR 7.04(CI: 2.98-
16.68)).
No significant pattern was found
between having a child born with
complications or prematurity and the
type of delivery. Type of delivery had
no impact on current breast feeding
patterns despite work status of
mother; however children born with
normal delivery were 2.7 times less
likely (OR CI: 1.2-6), to have difficulty
latching on the mother’s breast (Chi-
sq 6.12, p <0.014).
Type of delivery or intention to
breastfeed had little effect on the
mother’s ability to feed colostrum
to her child after birth. Current
breastfeeding had no relationship
with the mother’s ability to feed
colostrum to child after birth.
In our study, admission to nursery,
child’s pre-maturity or having
complications, had no statistically
significant affect on the child’s
ability to latch onto the breast of the
mother, however difficulty to latch on
the mother’s breast had significant
impact on whether the mother was
currently breastfeeding her child or
not (Chi-Square = 10.94, p <.001).
Working mothers found more
difficulty in latching their child to the
breast than non-working mothers
(Chi-Square 14.65, p <.001).
Table 11 (page 42) shows that
women who had normal delivery,
as opposed to C-section were more
likely to breastfeed colostrum to their
baby.
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Figure 2: Non-working Mothers’ breastfeeding pattern and Child Age
Table 8: Relationship
between Intention
to Breastfeed and
Working Status
Family Support for Breastfeeding
Support from husbands had no
impact on whether a mother was
currently breastfeeding or not,
however working mothers were less
likely to get encouragement from
their husbands to breastfeed (chi-sq
14.7, p <.001). (See Table 12 – page
42).
Only 7.5% of women actually
received any discouragement
regarding breastfeeding but it had
no effect on current breastfeeding
patterns.
Job-Related Factors Affecting
Working Mothers:
As can be seen in Table 13 (page
43), women who were currently
breastfeeding had mean working
hours of 7 in comparison to those
who were not breastfeeding currently
and worked an average of more than
8 hours daily.
Mean difference between
working hours of those currently
breastfeeding their child or not was
1.81 hours (8.73-6.92) (T-test 3.15, p
.002). Further analysis showed
that length of maternity leave,
having lactation room at workplace
or using breast pump at workplace
had no significant impact on current
breastfeeding patterns. However
if the mother took breastfeeding
breaks at work, it helped current
breastfeeding (Chi-sq 5.15, p .023).
In addition, the ability of taking
breastfeeding breaks was strongly
related to facilitation by the employer
(Chi-sq 17, p <.001).
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Table 9: Child Characteristics
Table 10: Number of Siblings and Currently Breastfeeding
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Table 11: Type of Delivery and Ability to Breastfeed Colostrum to the Baby?
Chi-square = 3.9, P-value = .048
Table 12: Husband Support in Working and Non-working Mothers
MEDICINE AND SOCIET Y
Discussion
This study provides information not
previously available from studies
done in Saudi Arabia on pattern of
breastfeeding in working mothers and
presence of workplace facilities e.g.
lactation room, breaks hours. In our
study sample number of non-working
mothers was 2.3 times the number of
working mothers, who were 30.5% of
those interviewed.
58 mothers out of the working
mothers had education at university
level; 18 mothers of the 76 women
with university level education and
above were not working at the time
of interview. Among the non-working
mothers 52 of the 139 mothers were
illiterate, while 87 mothers had some
form of education.
In our study, the most common
reason why the mother was not
able to breastfeed her child, was
not enough milk (inadequate milk).
This finding is consistent with other
studies (12).
Although, internationally, it is
promoted that women should
exclusively breastfeed their infants
for up to 6 months of age and that
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Table 13: Relationship Between
Working Hours And Currently
Breastfeeding.
Chi-Square 12.11, p value .002.
breastfeeding should continue into
the second year of a child’s life and
for longer, if possible or desired (1,2),
in our study, relatively few women
achieved these targets and, among
the working mothers as the age of
the child goes beyond 6 months, the
breastfeeding drops from 45% to
less than 10 % ( p .002). This finding
is nearly similar to other studies
(13,14).
In our results nearly 50% of the
women are not breastfeeding their
infant less than 7 months of age;
over two-thirds are not breastfeeding
when the child is between 7-18
months and only 12% continue
to breastfeed after the child is 18
months old (p <.001).
A study done in 2006 indicated
that just under half of infants were
still receiving some breast milk at
6 months (45.9%) and only 12%
were being fully breastfeed. By 12
months, only 19.2% of infants were
still receiving any breast milk (15).
Another study showed about 31% of
nonworking mothers breastfed for up
to 6 months as compared to 20% of
working mothers (16).
Some studies showed that higher
maternal education is associated with
longer duration of breastfeeding (16,
17).
A study has shown that, length of
maternity leave, having lactation
room at workplace or using breast
pump at workplace had no significant
impact on current breastfeeding
patterns, similar to another study
(18). In our study, 10% of working
mothers used the lactation room,
similar to the above study that
showed only 10.6% continued to
breastfeed after returning to work,
despite the provision of lactation
rooms and breast pumping breaks.
However our study results were not
consistent with those found by others
that mothers who express breast milk
were less likely to discontinue any
breastfeeding before six months (19).
However, in our study if the mother
took breastfeeding breaks at work, it
helped current breastfeeding (p value
.036). This finding is supported by
one study which indicated that more
flexible working conditions, including
increased opportunities for part-time
work, improved conditions at work
for breastfeeding, and breastfeeding
breaks at work, and helped to
support breastfeeding among women
who work outside the home (9) .
In addition, our study showed that the
ability to take breastfeeding breaks
was strongly related to facilitation by
the employer (<.001).
Women who were currently
breastfeeding had mean working
hours of 7 in comparison to those
who were not breastfeeding currently
and worked an average of more than
8 hours daily (p value 0.002). This
result is close to another study which
showed that 83.3% of the mothers
breastfed for 7 months or longer if
their partners worked part-time (20).
This is also in agreement with other
findings which included increased
opportunities for part-time work (9).
In many studies intention to
breastfeed is described as “attitude”,
or “feeding preference”. In our
study, over 75% of the women had
a strong intention to breastfeed their
child. This finding is in agreement
with another study (21). However,
intention to breastfeed did not have
any statistically significant affect on
whether the mother was currently
breastfeeding or not, irrespective of
work status.
A study presented that breastfeeding
duration was independently,
positively associated with maternal
feeding attitude and negatively
associated with breastfeeding
difficulties in the first 4 weeks,
and early return to work (15). One
study done in Jeddah, showed
a preference of mothers for
breastfeeding although it was not
significantly related to age, income,
parity, and education level (22).
In our study, support from husbands
had no impact on whether a mother
was currently breastfeeding or not,
however working mothers were less
likely to get encouragement from
their husbands to breastfeed (p
<.001) as shown in another study
(23). This finding is inconsistent with
other studies which found a positive
correlation between father support
and breastfeeding (24, 25).
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Conclusions
This study highlights that
breastfeeding rate is poor in both
working and non-working mothers.
Overall, 50% of the women are not
breastfeeding their infants less than
7 months of age, over two-thirds are
not breastfeeding when the child is
between 7-18 months and only 12%
continue to breastfeed after the child
is 18 months old.
The work has negative impact on
breastfeeding pattern because
among the working mothers, as
the age of the child goes beyond
6 months, the breastfeeding drops
from 45% to less than 10 % , which
is due to more working hours and
breastfeeding breaks not allowed
and no support from employers.
However, lesser working hours,
breastfeeding breaks and support
from employers may help in restoring
some breastfeeding patterns.
Also it is important to have more
comprehensive lactation measures
and a flexible environment in the
workplace to support working
mothers in continuing to breastfeed
after returning to work.
Limitations
1. Our study was done among
the National Guard population
which cannot represent the whole
population in Saudi Arabia.
2. We had a relatively small sample
size. A study conducted on a larger
and more diverse sample of working
mothers may improve on this study.
‘Research Questionnaire:
Breastfeeding and Work’ can be
found at the end of this article.
Acknowledgement
All my thanks, first and foremost,
before and above all, to Allah the
great almighty the most merciful, who
bestowed upon me the countless
blessings and gave me the strength
and patience to complete this
research.
To Dr. Amani Al Muallem my
supervisor and to Dr. Saeed ur
Rahman for their support. My special
thanks to my family for their support
and help and cooperation during the
research period.
References
1- World Health Organization. Global
Strategy on infant and young child
feeding. 55th World Health Assembly.
Geneva, Switzerland: World Health
Organization; 2002.
2- American Academy Of Pediatrics.
Policy statement. Breastfeeding and the
use of human milk. Pediatrics. 2005;
115:496-506.
3- Dobson B, Murtaugh M. Position of the
American Dietetic Association: Breaking
the barriers to breastfeeding. J. Am. Diet.
Assoc. 2001; 101(10): 1213-20.
4- Australian Bureau of statistics.
Breastfeeding in Australia. Canberra,
Australia: Australian Bureau of statistics;
2003.)
5- Miller N, Miller D, Chism M.
Breastfeeding practices among resident
physicians. Pediatrics 1996 ;( 3): 434-7.
6- Arthur CR, Saenz RB, Replogle WH.
The employment-related breastfeeding
decisions of physician mothers. J Miss
State Med Assoc 2003; 44(12):383-7
7- Arthur CR, Saenz RB, Replogle WH.
Personal breast-feeding behaviors of
female physicians in Mississippi. South
Med J 2003; 96(2):130-5.
8- Gielen AC, Faden RR, O’Campo
P, Brown H, Paige DM. Maternal
employment during the early postpartum
period: effects on initiation and
continuation of breastfeeding. Pediatrics
1991; 87(3):298-305.
9- Rae M ,Morrow A. Protecting,
promoting and supporting breastfeeding
among women in the labor force. Adv
Exp Med Biol . 2004; 554: 121-132.
10- Freed GL, Clark SJ, Sorenson J,
Lohr J, Cefalo R, Curtis P. National
assessment of physicians’ breastfeeding
knowledge, attitudes, training, and
experience. JAMA 1995;273(6):472-6.
11- Al-othman AM .Saeed AA, Bani IA,
Almurshed KS. Mothers’ practices during
pregnancy, lactation and care of their
children in Riyadh, Saudi Arabia. Saudi
Med J 2002; 23 (8):909 -914.
12- Al-hreashy FA, Tamim HM,
Albaz N,Al-kharji NH,Al-amer A,Al-
ajmi H,Eldemerdash AA. Pattern of
breastfeeding practice during the first 6
months of life in Saudi Arabia. Saudi Med
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13- Andrea McGrath RF, Patricia o,
Campo C .Hendricks B, David MP
Maternal employment during the early
postpartum period: effect on initiation
and continuation of breastfeeding.
Pediatrics.1991;87:298 305.
14- Lakati A, Binns C, Stevenson M.
Breast-feeding and the working mother
in Nairobi. Public Health Nutrition 2002 ;
5(6), 715-718.
15- Scott J, Binns C, Oddy W ,Graham K
. Predictors of breastfeeding
duration: evidence from a cohort study.
Pediatrics.2006;117:646-655.
16- Ong G, Yap M, Li FL, Choo
TB. Impact of working status on
breastfeeding in Singapore: evidence
from the National Breastfeeding Survey
2001. Eur J Public Health 2005 ; 15: 424-
430.
17- Anderson JK, Wallace L.M.
Breastfeeding works: the role of
employers in supporting women who
wish to breastfeed and work in four
organizations in England. J Public Health
2006; 28(3):183-191.
18- Chen Y ,Wu Y, Chie W. Effect of
work-related factors on the breastfeeding
behavior of working mothers in a
Taiwanese semiconductor manufacturer:
a cross -sectional survey. BMC Public
health 2006 ,6:160.
19- Win N N, Binns C W, Zhao Y, Scott
JA, Oddy WH. Breastfeeding duration
in mothers who express breast milk: a
cohort study. International Breastfeeding
Journal 2006,1:28.
20- Rayan AS, Zhou W, Arensberg
MB. The effect of employment status
on breastfeeding in the United States.
Women’s health issues 2006 , 16(5)
:243-251
21- Amy S. Humphreys, Nancy J.
Thompson and Kathleen R. Miner
Assessment of breastfeeding intention
using the Transtheoretical Model and
the Theory of Reasoned Action. Health
education research; Theory & Practice
1998; 13(3): 331-341.
22- Fida M N , AL-Aama Y J . Pattern of
infant feeding at a university hospital in
western Saudi Arabia. Saudi Med J 2003
;24(7) :725-729.
23- Ghaemi-Ahmadi S. Attitude toward
breast-feeding and infant feeding
among Iranian, Afghan immigrant
women in the United States: implication
for health and nutrition education. Am
Diet Assoc 1992;92(6): 676. J Am Diet
Assoc.1992;92:354-355
24- Freed GL , Fraley JK, Schanler RJ.
Attitudes of expectant fathers regarding
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227.
25- Ludvigsson JF. Breastfeeding in
Bolivia-information and attitude. BMC
Pediatric 2003; 3:4.
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EDUCATION AND TRAINING
Abstract
Short Stature can have intense
implications on the psychosocial
health of children and adoles-
cents. The consequences can be
far reaching, affecting even adult-
hood. The aim of this review is to
provide an up to date diagnostic
and management approach to this
common pediatric presentation.
This review provides an explana-
tion of the definitions and the
terminologies associated with
short stature. An evidence based
approach is outlined and the
common treatment options are
discussed.
Diagnosis and Management of Short Stature
Ayed Al Anezi (�)
Ibrahim Al Alwan (�,�)
(1) Pediatrics, King Abdulaziz Medical City,
National Guard Health Affairs, Riyadh
(2) College of Medicine, King Saud bin Abdulaziz University
for Health Sciences, Riyadh
Correspondence:
Dr. Ibrahim Al Alwan, MRCP (UK), FAAP, FRCPC
Consultant, Pediatric Endocrinology,
King Abdulaziz Medical City, NGHA
Dean, College of Medicine,
King Saud bin Abdulaziz University for Health Sciences
P. O. Box 3660, Mail Code 3133
Riyadh 11481, Kingdom of Saudi Arabia
Tel: 00966-1-801 1111 ext 51112
Fax: 00966-1-801 1111 ext 51119
Email: alwani@ksau-hs.edu.sa
Definition
Short stature is the result of impaired
bone growth in some period of life
including the intrauterine life. Growth
is measured by growth velocity. Table
1 (page 46) shows the normal growth
velocity in different age groups.
In some conditions, the growth
velocity is only diminished early
in life, like in cases of small for
gestational age (SGA). In other
conditions growth velocity is
continuously low; an example is
children with complete growth
hormone deficiency.
Short stature is defined as height
below -2.0 standard deviations (SDS)
below the mean “2.3 percentile” for
age, sex and population(6). Table 2
(page 46) shows the interpretation of
growth charts. This definition of short
stature is purely statistical; it implies
that 2.3% of the normal population
is short. The vast majority of these
short children have no definable
cause (7). The severity of short
stature is expressed through the
number of SD below the mean. -3
SD below mean is considered severe
short stature and only 0.13% of the
population lies below this point. The
prevalence of organic disease is
more prevalent in this subgroup (7).
Idiopathic short stature (ISS)
describes the group of patients with
short stature who remains after
excluding identifiable etiologies
(6). The specific criteria required to
diagnose Idiopathic short stature
is shown in Table 3 (page 46).
Idiopathic short stature makes up
60% – 80% of the total cases of short
stature (7).
ISS should be subcategorized,
principally based on auxological
criteria (11). Patients with Idiopathic
short stature are subcategorized
according to:
i The relationship between the child’s
expected final adult height and the
mean parental height (MPH):
Introduction
Short Stature (SS) is one of the
most common presentations seen in
pediatric endocrine clinics (1). This
common complaint is challenging
even to the experienced pediatric
endocrinologist(2). The differential
diagnosis is wide and one or multiple
mechanisms can be involved in one
patient. The first encounter with the
patient may not reveal the cause,
and careful follow up over months or
years is often required.
Short stature has become a public
health issue. Living with short
stature involves potential risks
to psychological functioning and
quality of life(3). In the Arabian Gulf
countries, the health care sectors
are enjoying huge investment from
both governmental and private
sectors. Expensive health care
modalities, such as growth hormone
are becoming more available and
affordable(4).
In this article, an updated review
is provided on the management
of children with short stature
including definition, possible causes,
appropriate investigations and
current therapy.
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Adopted from (5)
Table1: Normal Linear Growth Velocity in children cm/ year
Reference (8)
Table 2: Expression of linear growth
Table 3:The criteria are required to make the diagnosis of ISS (9)
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• Familial Idiopathic short stature (FSS) – The expected final adult height is close to MPH
• Non-familial Idiopathic short stature (NFSS) – children who are short, even for their parents.
• MPH is calculated by the Tanner method i.e. Mother’s Height + Father’s Height (+13 for boys and -13 for girls)
divided by 2. (12)
ii. Onset of puberty:
• Constitutional Delay of Growth and Puberty (CDGP) is considered when there is delayed onset of puberty.
There is usually positive family history of delayed puberty. When the child presents in early childhood, the onset of
puberty is not known. Therefore, the bone age can be used to predict CDGP.
Bone age is used for the prediction of final adult height. Several methods are used; the most common is based on the
Greulich and Pyle atlas. Bone age is therefore beneficial for the determination of the etiology of short stature:
• FSS: chronological age equals bone age > height age.
• CDGP: chronological age > bone age, while the bone age is equal to height age.
Table 4: Interpretation of bone age(13)
Table 5: Comparison between Familial short stature (FSS) and constitutional delay of growth and puberty(14)
In cases of familial short stature and constitutional delay of growth and puberty, the yield after extensive investigations
is low and the physician may prefer to observe the growth parameters and puberty stage. Growth hormone is less
efficacious in these groups.(15)
The evaluation of a short child requires a detailed history and a thorough examination. Table 6 (page 48) lists
important elements essential for the approach of a short child.
A short child requires specific investigation to confirm the underlying etiology, and routine investigations to rule out
silent causes of short stature. The routine investigations are explained in Table 7.
(See Baseline Investigations page 50)
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Table 6: Approach of short stature (continued top of next page)
Growth hormone testing
The indication for growth hormone
testing varies from one center to
another. Some endocrinologists believe
that growth hormone testing should
be done to all patients with short
stature, together with IG-1 and IGFBP-
3 physiological. Others will screen
patients through growth velocity, bone
age and serum IGF-I and IGFBP-3
levels. If Growth Hormone Deficiency
(GHD) is suspected, then GH
stimulation is carried out.
Growth hormone tests can be either
physiological or pharmacological.
Physiological methods include sleep,
fasting or exercise. In spite of the high
levels of sensitivity, specificity and
reliability, physiological tests require
considerably more effort to perform,
from the physician as well as from the
child(16).
Pharmacological Growth hormone
testing has major drawbacks.
Pharmacological tests are by nature
non-physiological, so they may not
reflect the true GH secretion pattern.
There is marked variability in GH
assays. Furthermore, despite different
potency for growth hormone stimulation,
the cut-off levels are the same for all the
tests.
The cutoff for these tests are not
defined on large population studies(17).
There is a continuum between values in
normal people and in cases of severe
growth hormone deficiency. All the tests
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Table 6: Approach of short stature (continued)
have poor reproducibility represented
by the fact that there is high percentage
of children with an initial GH test
indicating GHD and when re-tested
they score normal GH levels(18).
Therefore, in order to reduce the
occurrence of false positive testing,
a single negative test result must
always be confirmed by another test.
Historically, the insulin tolerance test
(ITT) has been used in many centers,
because it is believed to be a potent
stimulus to GH secretion. However,
currently it is not recommended to
use ITT, due to risks associated with
hypoglycemia and its reversal (19).
20 mU/L cut-off level is used to define
growth hormone sufficiency. The
equivalent of this in ng/ml depends
on which International Standard [IS]
is used. (equivalent to 10 ng/ml if
calibrated against (IS 80/505), and
to 6.7 ng/ml if calibrated against the
second IS for GH (IS 98/574).
A recent consensus statement
from an international collaboration
recommended that GH concentrations
should be reported in IS 98/574 (20).
Plasma IGF-I and IGFBP-3
IGF-1 and IGFBP-3 are dependent
on GH secretion and action. Their
levels correlate with spontaneous GH
secretion in some studies (21), but less
so in others (22) (23). IGF-I is the most
GH-dependent parameter within the
axis, and is therefore the
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Baseline investigations
preferable test to use (24). IGFBP-3 is felt to be less useful, but may have an advantage in very young children, as
there is less overlap between normal and GHD children than occurs for IGF-I levels (25). Approximately 25-50% of
children with ISS have an IGF-I of less than -2 SDS (26).
Other IGF binding proteins such as ALS or IGFBP-2 do not have an established role in diagnosing GHD. In those
found to have very low or undetectable IGF-I levels but only modest short stature, measurement of ALS may be
required to identify those children with ALS defects (27).
GH insensitivity
This is a group of both congenital and acquired conditions characterized by normal or supra-normal growth hormone
level which has little or no physiological effects. Growth hormone insensitivity should be suspected when having a
normal or high GH stimulation result and low or very low IGF-1, or when there is a poor response to an appropriate
dose of GH. If the IGF-1 level is normal, GH insensitivity is unlikely(28).
The following two tables present the most common causes of GH insensitivity.
Table 7a: Acquired causes
Table 7b: Genetic causes
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A more direct way to assess GH insensitivity is the IGF-I generation test (IGF-GT), involving measurements of serum
IGF-I, IGFBP-3 and GH binding protein at baseline and after 4-8 days of GH injections.
Treatment of short stature
Growth hormone
Growth hormone GH is one of the anterior pituitary gland hormones which are secreted by somatotropic cells.
GH secretion is mainly nocturnal with intermittent release, occurring especially during REM (rapid eye movement)
sleep. Growth hormone release is stimulated by Growth Hormone Releasing Hormone (GHRH) and ghrelin while
somatostatin produces the strong inhibitory action. (29)
GH acts at two main sites: the liver and growth plates. In the liver GH stimulates production of IGF-I, IGFBP-3, and
acid labile subunit (ALS). GH stimulates the production of IGF-I and proliferation of prechondrocytes at the level of the
growth plate.
In 1956 GH was isolated for the first time from human pituitaries. Biochemical structure was established in 1972, but
it was until 1985 when Recombinant Human Growth Hormone (rhGH) was produced and administered as used by
clinicians.
Only USA Food and Drug Administration (FDA) approved growth hormone for Children with idiopathic short stature:
· whose height is >2.25 standard deviations (SDs) below the mean
· who have predicted adult heights that are >2 SDs below the mean
· who have open epiphyses
· who have no other condition that would better be treated by other means or by observation.
A successful response to GH treatment in the first year of therapy is defined by a first year height velocity increment
more than 3 cm/year, a delta height SDS more than 0.3 to 0.5, or a height velocity SDS more than 1 (7).
Adopted from (30)
Table 8: Approved indications for
GH use in the USA and Europe (E)
in children
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While receiving growth hormone, the
thyroid hormones, IGF-1 and IGFBP3
levels are monitored. A measurement
of FT4 and TSH after 3-6 months
and then yearly is helpful to detect
subclinical hypothyroidism as GH
may increase T4 to T3 conversion
and increase thyroid hormone
metabolism. IGF-I may be measured
at 6-12 month intervals to assure that
its levels remain within the normal
range for age (31-32). There is no
convincing evidence for the routine
monitoring of Complete blood counts,
lipid profiles, bone markers, and
bone age(33).
Measurement of fasting blood sugar
and hemoglobin A1C is indicated
when impaired carbohydrate
tolerance is suspected. The majority
of trials assessing the impact of GH
on glucose metabolism revealed a
slight increase in fasting and post-
glucose load insulin levels (34). Most
short-term clinical studies did not
reveal however, an impaired glucose
tolerance or new onset diabetes as a
result of GH treatment.
Side effects of GH include Transient
intracranial hypertension, slipped
femoral capital epiphysis, and
gynecomastia. Symptoms of
increased intracranial pressure
usually occur within the first 8
weeks of therapy and resolve after
discontinuing or reducing the dose of
GH.
Children receiving GH, who have
been treated for malignancy, account
for approximately 20% of patients
receiving GH therapy. Existing
evidence indicates that GH treatment
does not increase tumor recurrence
in persons successfully treated for
their primary lesion (35). Prudence
would dictate waiting one year after
completion of tumor therapy before
initiating GH therapy in this group of
children(36).
Children who should be monitored
carefully with regard to tumor
formation if treated with GH:
· neurofibromatosis type 1
· Down syndrome
· Bloom syndrome
· Fanconi’s anemia
IGF-I
Produced by liver and to a lesser
extent by the growth plate and bone
in serum. The vast majority of the
IGF-I is found in the ternary complex,
formed by IGF-I, IGFBP-3, and a
glycoprotein known as ALS. Less
than 1% circulates in the free form.
IGFs actions are determined by the
availability of free IGFs which interact
with IGF receptors.
FDA has approved IGF-1 treatment
in children with severe primary IGF-I
deficiency and in children with GH
gene deletions who have developed
neutralizing antibodies to GH.
GnRH analogs
GnRH analogs have been used
for suppressing the production of
sex steroidal hormones. This slows
the process of epiphyseal fusion,
giving more time for linear growth
and having ultimately greater
final adult height. In children with
precocious puberty, data shows that
the use of GnRH analogues allows
children to be taller by delaying their
puberty (37) (38). The benefit of
this treatment on short children with
normal onset puberty is less clear
and further studies are required to
investigate this area(39).
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KM, Rose SR. Insulin-like growth
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25. Jensen RB, Jeppesen KA,
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KM, Skakkebaek NE, et al. Insulin-
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research. 2005;63(1):15-21.
26. Ranke MB. Defining insulin-like
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27. Domene HM, Bengolea SV,
Martinez AS, Ropelato MG, Pennisi
P, Scaglia P, et al. Deficiency of
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5;350(6):570-7.
28. M. B. Ranke DAP, E. O. Reiter.
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A, Caminos E, Gualillo O, Alvarez
CV, et al. Hormonal control of growth
hormone secretion. Horm Res.
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31. Park P, Cohen P. Insulin-like
growth factor I (IGF-I) measurements
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Horm IGF Res. 2005 Jul;15 Suppl A:
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in growth hormone-treated children.
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33. Wit JM, Reiter EO, Ross JL,
Saenger PH, Savage MO, Rogol
AD, et al. Idiopathic short stature:
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treatment. Growth Horm IGF Res.
2008 Apr;18(2):111-35.
34. Jeffcoate W. Growth hormone
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resistance, glucose intolerance
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35. Swerdlow AJ, Higgins CD, Adlard
P, Preece MA. Risk of cancer in
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36. Wilson TA, Rose SR, Cohen P,
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37. Paul D CF, Grumbach MM, et
al. Long-term effect of gonadotropin
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on final and near-final height in 26
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treated at a median age of less than
5 years. J Clin Endocrinol Metab.
1995;; 80:546-51.
38. Kletter GB, Kelch RP. Clinical
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39. Pasquino AM, Pucarelli I,
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Abstract
Background: Primaquine is cur-
rently the only medication used
for radical cure of Plasmodium
vivax infection, and as plasmo-
dium gametocyte treatment.
Unfortunately, its use is not
without risk. Patients with glu-
cose-6-phosphate dehydrogenase
(G6PD) deficiency have an in-
creased susceptibility to haemo-
lysis when given primaquine. This
potentially fatal clinical syndrome
can be avoided if patients are
tested for G6PD deficiency and
adequately informed before being
treated.
Objective: To explore the clinical
and paraclinical characteristics
of acute intravascular hemolysis
caused by primaquine so as to
help in prevention, early diagno-
sis and treatment.
Methods: Analysis of 57 cases
of acute intravascular hemolysis
caused by primaquine was made
and literature review was done.
This study was conducted among
patients from some areas preva-
lent with malaria in Yemen.
Results: All patients had the his-
tory of administering primaquine,
with the symptoms of acute
hemolysis; the clinical and para-
clinical characteristics of acute
intravascular hemolysis were
observed: sudden attacks
of lumbar and abdominal pain,
vomiting, fever, oligo-anuria,
temporary consciousness loss,
dark urine (black), low hemo-
globin, high reticular red blood
cell, and jaundice. In our study
the Lumbar pain was detected
in 55 (96%) patients, Black dark
urine 57 patients (100%), Fever
75% (43 patients), Oliguria-anuria
22% (13 patients), General symp-
toms 100% (57 patients), Pallor
(96%) 55 patients, Vomiting 65%
(37 patients), Abdominal pain
61% (35 patients), jaundice 88%
(50 patients). The Aden province
was the leading in the number of
patients (26 patients) 46%.
The predominant group was
the male gender (40 patients).
34 patients were between 25-35
years old and only 3 patients
were more than 35 years old. The
vast majority had mild-moderate
serum creatinine level while only
8 patients had serum creatinine
more than 8 mg%. Regarding
hemoglobin Hb level 3 patients
had very severe anaemia and
none of the patients had normal
Hb level. In 43 patients their Hb
was moderate-severe. All patients
showed serum reduction of LDH
and G6PD level. Mild elevation of
serum bilirubin was found in 48
of the patients. Hemodialysis was
done in 6 patients only while oth-
ers were treated conservatively.
4 patients died of the underlying
acute renal failure due to massive
haemolysis. There is a very clear
relationship between mortality
and low level of Hb, G6PD level,
high creatinine.
Conclusion: When sudden attacks
of the above symptoms appear,
the acute intravascular hemoly-
sis should be taken into consid-
eration first and the giving of the
primaquine orally be immediately
stopped. Active and proper treat-
ment should be made. Whilst
primaquine remains the drug of
choice to eradicate hypnozoites
and control P. vivax transmis-
sion, the risks associated with
its use must be minimized during
its deployment. In areas where
P. vivax exists, patients should
be tested for G6PD deficiency
and adequately informed before
administration of primaquine.
Keywords: acute hemolysis,
acute intravascular hemolysis,
primaquine, G6PD deficiency
Clinical presentation and the outcome of cases with acute
intravascular hemolysis caused by primaquine in Yemen
Saeed Mohamed Alwan Abdullah
Correspondence:
Saeed Mohamed Alwan Abdullah
Associate Professor
Department of Internal Medicine, Faculty of Medicine,
University of Aden, Yemen
Email: smaabdullah@yahoo.es
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Introduction
Hemolytic anemia after
administration of the antimalarial
drug primaquine was reported as
early as 1926(1). However, it was
not until the 1950s that a series of
investigations by United States Army
researchers identified glucose-6-
phosphate dehydrogenase (G6PD)
deficiency as the cause of hemolysis
after administration of the related
antimalarial primaquine(2).
These studies first showed that
erythrocytes from subjects who were
sensitive to the antimalarial drug
primaquine had lower glutathione
levels than those who were non-
sensitive to primaquine (3) and
subsequently that erythrocytes from
primaquine-sensitive individuals were
unable to maintain glutathione levels
after challenge with acetylphenyl/
hydrazine(4). In southeast Asia,
the prevalence of G6PD deficiency
differs greatly by region and ethic
group and variants are similarly
diverse (5,6,7). For example,
in Myanmar, Iwai et al. found
prevalence of G6PD deficiency as
high as 10.8%. In Thailand, G6PD
variants comprised only 68.6%. In
India, the population is diverse and
the government has tried to map
G6PD deficiency more accurately.
A recent review summarized G6PD
prevalence across the country(8).
Prevalence of G6PD deficiency is
generally 0-10%, although some
communities may have higher
prevalence 27.5% (9). In Latin
America, the prevalence of G6PD
deficiency is generally low (< 2%).
In the Middle East, malaria is still
present in some areas, including
defined regions in Iran, Iraq, Oman,
Saudi Arabia, Syria, Turkey, and
Yemen. The prevalence of G6PD
deficiency has been reported to be
6.1% in Iraqi males (10),11.6% in
Iran (11) ,between 3.6% and 8.4%
in Saudi Arabian males (12,13,14),
3.0% in Syria (11), 6.9% in Turkey
(15)and 6.2% in Yemen (16).
Oman has the highest prevalence
of G6PD deficiency in the region;
26-29% of Omani males have this
disorder(17,18,19).
Glucose-6-phosphate
Dehydrogenase (G6PD) deficiency
was discovered by Alving and
coworkers(1) when they investigated
the unusual haemolytic reaction that
occurred in ethnic Black individuals
following the administration of
primaquine, an 8-aminoquinoline,
for the radical treatment of malaria.
Such “primaquine sensitivity” was
later observed in other ethnic groups
as well. The use of primaquine is
not without its risks. Patients with
the inherited sex-linked deficiency of
glucose-6-phosphate dehydrogenase
(G6PD), have an increased
susceptibility to acute intravascular
haemolysis when treated with
oxidant drugs such as primaquine
(6). Exposed patients commonly
present with severe abdominal pain,
nausea, vomiting and headache.
High fevers with rigors can also
be seen. The urine becomes
almost black and output drops as
renal failure ensues. This severe
clinical syndrome of intravascular
haemolysis, hemoglobinuria and
acute renal failure is known as black
water fever. This potentially fatal
clinical syndrome can be avoided
if patients are tested for G6PD
deficiency before the administration
of primaquine. The most reliable
way to detect G6PD deficiency is
by DNA analysis, but a diagnosis of
G6PD deficiency can also be made
by a rapid fluorescent spot test (7).
Populations where G6PD deficiency
is common, i.e., an incidence of
over 1%, are distributed in the
Mediterranean regions, across the
Middle East, India, Indochina, South
China as well as middle Africa. This
distribution is similar to that of the
thalassaemias and is thought to be
due to the selective advantage of
these phenotypes against endemic
malaria infection in the past. In fact,
Luzzatto et al (20) have shown that
in the heterozygote G6PD deficient
subjects, malaria parasite are
preferentially found in G6PD normal
red cells.
The majority of the G6PD deficient
variants, only manifest when these
individuals took drugs or chemicals
that trigger the massive haemolysis.
Classically, within two days of
ingestion of the offending agent, the
patient will develop fever, dark brown
to black, “Coca-Cola”, urine, jaundice
and anaemia. Acute tubular necrosis
may complicate such a severe
haemolytic episode. The decision
for intervention after drug-induced
G6PD deficiency-related hemolysis
depends on the time course of the
reduction in hemoglobin. A rapid
decrease in hemoglobin requires that
the drug be stopped immediately.
Transfusion is clinically guided, and
there is no cut-off for hemoglobin
to define this decision. Importantly,
transfusion may not be possible in
remote areas. In general, a severe
G6PD-related hemolytic crisis can
be treated in a similar fashion to
an incompatible blood transfusion
(21,20). Some approaches to
reduce the severity of G6PD
deficiency-related hemolysis have
been investigated. Vitamin E has
been shown to increase erythrocyte
lifespan in G6PD Mediterranean
subjects when given for a year.
However, there is no evidence
that there would be any benefit of
administration for acute hemolytic
crisis. Desferrioxamine has been
used during acute hemolytic crisis
and has been claimed to shorten the
duration of the crisis and decrease
the frequency of blood transfusion
needed (21). Early indicators of
G6PD deficiency-related hemolysis
would be valuable for use in clinical
trials both from a safety perspective
and as outcomes investigating
hemolytic potential. Because
the glutathione level decreases
before hemolysis starts, this could
possibly be used as an early
indicator if facilities for detecting
this are available. Haptoglobin
determinations are not reliable in
some populations and reticulocyte
formation occurs too late during
hemolysis to use as an indicator.
Mean hemoglobin concentration and
mean hemoglobin concentration of
reticulocytes could be used to detect
early hemoglobin loss, but this has
not been investigated for G6PD
deficiency-related hemolysis. Plasma
hemoglobin is present at only low
concentrations and will not provide
meaningful measurements. Heinz
bodies (denatured hemoglobin)
are present early during hemolysis,
but can be difficult to see without
considerable experience and this is
usually impractical in field conditions.
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10�� MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
Similarly, carbon dioxide release
would be accurate, but is impractical
in the field, although it may be
possible in a research setting.
G6PD deficiency: is a combined
hemolytic anemia that occurs after
administration of primaquine. Cells
with G6PD deficiency are sensitive
to oxidants such as primaquine.
Usually these cells have functional
G6PD but the enzyme has a
shorter half-life. The consequence
is that the hemolytic anemia and
reticulocytosis is transient even if
primaquine therapy continues – the
older RBC are replaced by younger
cells with more G6PD. Physical
signs of G6PD deficiency anemia
include Heinz bodies inside RBC,
hemoglobinuria, and jaundice.
Normally, G6PD reduces NADP to
NADPH. With primaquine (or other
oxidative stress), the opposite occurs
and NADPH is lost. To compensate,
glucose is utilized in the pentose
shunt, and NADPH regenerates.
No problem. With G6PD deficiency,
glucose can’t go into the pentose
shunt. Primaquine will cause H2O2
and free radicals to build up, and
NADPH plummets. Hemoglobin
precipitates into Heinz bodies, and
RBC are destroyed.
G6PD deficiency screening
The NADPH fluorescence test is
a qualitative test and is the gold
standard for G6PD deficiency
screening(24,25). This test is
rapid, reliable, easily performed,
and is almost equivalent to a point
of care test, taking approximately
15 minutes to perform. It requires
only a blood spot on filter paper.
Levels < 2.29 UI/g hemoglobin were
considered as evidence consistent
with G6PD deficiency (23). Effect of
G6PD genotype: G6PD variants are
classified according to the phenotypic
effect:
• class 1, enzyme deficiency with
chronic nonspherocytic hemolytic
anemia;
• class 2, severe enzyme deficiency
( 60-100% activity);
• class 5, increased enzyme activity.
For example, the common African
variant G6PD A- is usually a mild/
moderate deficiency (10-15% of
normal activity, hemizygous males)
(26,10). In contrast, the G6PD
Mediterranean variant is more severe
(< 1% of normal activity) (27,10).
Acute Renal Failure: Those with
S.cr>1.5 mg% and normal size
kidneys on USG were included and
divided into 3 groups: mild (Scr5 mg%). Dialysis:
Renal replacement therapy in the
form of haemodialysis was performed
if clinically indicated. Early dialysis
was considered in the presence
of severe acidosis and/or fluid
overload. Peritoneal dialysis (PD)
was not available. Broadly, those so
treated were patients with advanced
uraemia, acidosis, hyperkalaemia,
fluid overload and rising creatinine
with or without oliguria. Double-lumen
catheters were inserted into the
subclavian, internal jugular.
Objective
To explore the clinical and
paraclinical characteristics of acute
intravascular hemolysis caused
by primaquine, so as to help in
prevention, early diagnosis and
treatment.
Patients and Methods
It is a retrospective and prospective
descriptive and analysis study of
primaquine induced intravascular
hemolysis IVH during antimalarial
therapy.
Study area: The study was carried
out at different private clinics and a
government central hospital. This
center is Al Gamhouria Teaching
Hospital Aden, Yemen. It is a
retrospective analysis. The patients
included were 57 consecutive
cases with clinical and paraclinical
features of primaquine induced IVH
during the period April 2008- April
2010. These patients were on the
primaquine therapy given during
acute plasmodium falciparum
malaria. Details of history and
clinical assessments were noted in
all. Subsequent follow up was also
done by a competent clinician during
treatment till discharged or died.
Clinical assessment: Subjects
were examined by an experienced
general physician before and after
treatment. A list of adverse events
was examined initially before
treatment and used as a baseline for
further assessments of the presence
or absence of secondary adverse
events. These were defined as
the expression of any new clinical
symptom or sign or the aggravation
of an already existing one during the
period of treatment. The protocol
included qualitative analysis, as
recorded by the physician, of
1) the relationship between the event
and the treatment, 2) follow-up on the
development, 3) the severity, and
4) the outcome. Patients with
clinical and paraclinical features of
primaquine only induced IVH were
included in the study. Details of
history and clinical assessments
were noted in all. Studied patients
all had falciparum plasmodium or
their gametocyte on blood smear.
The drugs they received were (drug
combination) consisted of
(i) sulfadoxine-pyrimethamine 25
mg sulfadoxine plus (1.25 mg/kg
as a single dose on the first day)
(ii) artesunate (AS) (4 mg/kg/day for
3 days;), and
(iii) primaquine (0.75 mg/kg as
a single dose (30-60mg) on
the first or third day of treatment,
in conjunction with the first or last
dose of AS) (22,23). Those
suffering from intravascular
hemolysis were selected for
further study on the basis of the
following criteria:
(i) past personal history of
primaquine prescription, and
symptomatology
(ii) clinical findings, classically, within
two days of ingestion of the
offending agent, the patient will
develop fever, dark brown to
black, “Coca-Cola”, urine,
jaundice and anaemia. Acute
tubular necrosis may complicate
such a severe haemolytic
episode, especially in those
with underlying diseases of the
liver such as hepatitis. In those
with compromised renal blood
flow as evidenced by low urine
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output, exchange transfusion to
remove the irreversibly damaged
red cells that block the
microcirculation, can also avert
the renal complication. In some
patients, disseminated
intravascular coagulation (DIC)
may complicate, such as massive
intravascular haemolysis, and
need appropriate treatment.
(iii) paraclinical findings, hematology
and biochemistry, sonography of
abdomen (kidneys)
(iv) detection of any complication
such as acute renal failure. Blood
was obtained by pricking finger.
• Complete blood count was
performed on a Coulter machine
(Coulter Electronics).
• Blood urea, creatinine and
electrolytes were all analyzed.
• Liver function tests were performed
whether jaundice or not.
• Lactate dehydrogenase (LDH)
and reticulocyte count were also
requested.
• Glucose-6-
phosphatedehydrogenase (G6PD)
was indicated.
All the patients were subjected
to complete hematological study
(hemoglobin, hematocrite, WBC,
ESR, and blood film, platelets,
retics), routine examination of
urine, biochemistry (estimation of
blood sugar, renal and liver function
tests, G6PD, LDH) and abdominal
sonography.
Statistical analysis: Was performed
using SPSS for Windows version
18 (SPSS Inc., USA). Continuous
variables are reported as mean and
standard deviation (S.D.), while
categorical variables are shown as
count and proportion, chi square (x2)
test was used to compare between
groups as appropriate. For all tests,
two-sided P values were calculated
and the results were considered
statistically significant if P<0.05.
Ethical statement: The study was
conducted in accordance with the
Helsinki Declaration for the protection
of human subjects. Verbal informed
consent was obtained from all
patients or the guardian (less than 18
years).
Table 1: Shows the Characteristics of the Whole Sample
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*p value (Pearson), not tested= facilities was not available
Table 2: Shows The Characteristics of the Studied Sample according to Gender
*significant (p value < 0.05)
Table 3: Shows Some Characteristics of the Studied Sample According to the Outcome
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
Results and Discussion
Hemolytic reactions during
antimalarial therapy have proved
to be a limiting factor in the
use of 8-aminoquinolines for
the cure of vivax malaria. The
most severe type of reaction is
clinically identical to blackwater
fever, and is characterized by
massive, explosive, intravascular
hemolysis with hemoglobinemia and
hemoglobinuria, which constitutes
a medical emergency necessitating
immediate transfusions. Acute
hemolysis has been observed during
the therapeutic use of a number of
8-aminoquinolines, for example,
pamaquine,(1) pentaquine,(2) and
isopentaquine.(3) The incidence
of hemolytic reactions is higher in
the dark-skinned races. According
to Earle and co-workers (37), 5 to
10% of Negroes contract acute
hemolysis when given 30 mg or more
of pamaquine daily. Only 1% of white
subjects studied by them contracted
hemolysis which, however, was not
acute.
In this study, we observed a
statistically significant reduction in
Hb concentration in patients after
administration of a gametocytocidal
drug combination containing
primaquine (PQ) and artemisinin
(tablets). The observed hemolysis
was strongly related to G6PD
deficiency. All patients 57(100%)
became moderately-severe
anemic after administration of
the PQ combination. This is
potentially important for mass
drug administration both as part of
attempts to eliminate falciparum
malaria and in areas where vivax
malaria is predominant, where co-
administration with PQ is increasingly
likely (28). This study provides
evidence for reductions in Hb
concentrations after a single dose of
PQ, at least in the context of
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coadministration with sulphadoxine-
pirimethamine +artesunate
(SP+AS). The G6PD was reduced
in 22 (38.6%) of the study sample
population, (29), and because
hemolysis in individuals with African-
variant G6PD deficiency is generally
milder than that in individuals with
the Mediterranean variant (30).
All patients had pallor with dark
black urine and 13 (23%) patients
had oligo- or anuria; jaundice was
detected in 50 (90%) patients on
presentation. Lumbalgia was present
in 55 (96%) patients; these features
seen on the presented cases on
admission coincided with other
international reports.(14,27) About
the residence of the study sample,
most of the patients (88%) came from
Aden governorate and other proximal
provinces. This was a logical
approach to the unique nephrology
and haemodialysis HD center in this
area. Regarding sex distribution,
there were 40 (70.2 %) males and
17(29.8 %) females with a mean age
of 33.5 ±17.2 years (range: 15-50
years). The majority of the patients
were younger than 35 years old,
more among males than females,
so it affects the productivity of these
patients with bad economic outcome
on the families of those patients and
the society.
In contrast to our expectations,
we observed considerable and
statistically significant reductions
in Hb concentrations, and 100% of
the patients (57 patients) became
moderately to severely anemic after
the intervention with SP+AS+PQ.
This reduction in Hb appeared
frequently (31), and some of the
patients needed hospitalization and
experienced clinical consequences
from the intervention in terms
of clinical symptoms of anemia
or life-threatening anemia. The
asymptomatic nature of hemolysis is
in line with previous studies where
adult African-Americans with the
G6PD developed mild, asymptomatic
hemolysis (decrease in Hb of 0.5 to
2.5 g/dl) after weekly administration
of 45 mg PQ for 8 weeks (31) and
where 8 to 18% of the red cells of
G6PD-deficient Thai adults were
affected after a single dose of 45 mg
PQ (32). The severity of hemolysis
was highly variable between
individuals and strongly related
with G6PD genotype, being most
pronounced in homo-/hemizygous
(G6PD A?) individuals. Relative
overdosing was related to the degree
of hemolysis in many patients. This
indicates that future studies should
base treatment dose on weight.
The current data are not conclusive
and are insufficient to lead to public
health policy changes. The value of
PQ in malaria transmission-reducing
strategies depends on the individual
risks in relation to the individual and
community benefits, which both
depend on the transmission setting.
Substantial community benefits in
terms of a reduction in the burden
of malaria may justify side effects
even if the immediate individual
benefit is limited. Together with a
recently published study (29), our
data suggest that PQ at the current
dosing schedule may not be optimal
for wide-scale implementation in
combination with artemisinins,
even in areas with a relatively low
prevalence of G6PD deficiency.
Because of the potential role of PQ
in combination with artemisinins in
malaria elimination efforts (33,34,
53,36), we consider it important
to conduct dose-finding studies to
define a dosage of PQ that has
gametocytocidal properties that are
similar to those of PQ at 0.75 mg/kg
(29) but is sufficiently low to prevent
hemolytic side effects. More than
a half (67%) of the patients had
creatinine level more than 2 mg%,
but more than a half of females had
creatinine level less than 2 mg%,
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
Figure 1: Shows the
Presenting Clinical
Features in Primaquine
Induced-IVH
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but more than a half of females
had creatinine level less than 2
mg%. The hyper-bilirubinaemia of
almost all icteric patients was of the-
unconjugated variety. Serum G6PD
was tested in 22 patients and in all it
was reduced.
Millions of people receive primaquine
against sexual plasmodia responsible
for malaria transmission. These
gametocytes cause no symptoms
and do not threaten the host, but
they infect mosquitoes and threaten
the community. Primaquine causes
hemolysis in the small minority of
patients with glucose-6-phosphate
dehydrogenase deficiency (G6PDd).
Clinical studies in the 1950s
demonstrated gametocytocidal
primaquine to be safe without
G6PD deficiency screening. Dosage
Schedules – Primaquine8-(4-amino-
1-methylbutylamino)-6-methoxy
quinoline, 30 mg. of base daily,
was administered orally in single
or divided doses. Disease factors.
Acute hemolysis can occur in P.
falciparum malaria independent
of drug therapy, and appears to
be related linearly to the level of
parasitemia. It is unknown if there
is an interaction between disease-
related and G6PD deficiency-related
hemolysis. In P. vivax infection, a
decrease in the hemoglobin level is
almost certainly due to drug-induced
hemolysis owing to the low parasite
count. Uncommonly, hemolysis
may continue after malaria is cured,
possibly due to persisting antibodies
against erythrocytes, although
their role must be considered
controversial.
Conclusion and
Recommendation
• These patient were selected to
study the possible primaquine-
induced IVH. 57 patients (100%)
presented with black urine and
Anaemia. (The most frequent
presentation was with black/dark
urine and anemia)
• Nearly all patients were from Aden
and neighboring provinces in
Yemen
• Males predominated and most
cases were young and less than 50
years.
• Acute renal failure ARF was seen in
41 (72)%) of patients but
oligo-anuric cases were only 13
(23%) patients. Hemodialysis was
done in 6 cases
• Clear and prominent correlation
between mortality and G6PD
deficiency, high blood bilirubin,
LDH, serum creatinine, and
anaemia.
• Six (10 %) out of 57 patients had a
mortal outcome.
• When sudden attacks of the
above symptoms appear, the acute
intravascular hemolysis should be
taken into consideration first and
the giving of the primaquine orally
be immediately stopped. Active and
proper treatment should be made.
• The view of primaquine as a safe
gametocytocide thus rests largely
upon observations from a G6PD
deficiency variant that is unlikely to
challenge safety.
• The early clinical work does
not seem to afford an adequate
assessment of safety in G6PD
deficiency patients.
• Potential risk of harm without
clinical benefit to the patient raises
ethical questions that should be
examined.
Conflict of interest:
The author was the Senior Internist
and lecturer at Aden medical
faculty, Yemen, founder and head
of the hemodialysis center Aden
governorate, Yemen during the
period (since its foundation in 1990
to 2007)
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CME QUIZ
CME Quiz
What is your provisional diagnosis?
Once you have decided on an answer see opposite page for author’s answer
(Case taken from Low Back Pain, Professor John Murtagh, © mediworld International)
MIDDLE EAST JOURNAL OF FAMILY MEDICINE • VOLUME 7 , ISSUE 10 ��
CME QUIZ
MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 10 ISSUE 9
Answer and Feedback
The provisional diagnosis is spinal metastases from
carcinoma of the prostate. The history is typical of
metastatic disease with unrelenting pain present
day and night. Reduction in all movements is also
a characteristic. A rectal examination to assess the
nature of the prostate would be important. It was very
hard and irregular in this patient.
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ORIGINAL CONTRIBUTION AND CLINICAL INVESTIGATION
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