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

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Improving oral health for the elderly: An interdisciplinary approach (pp. 3–13). New
York: Springer Publishing.

Allen, R. H., & Goldberg, A. B. (2007). Emergency contraception: A clinical review.
Clinical Obstetrics & Gynecology, 50, 927–936.

“ARCgis: Layers and layers of data.” (2005). Primus 11. Retrieved June 13, 2008, from
http://dental.columbia.edu/pubs/Primus2005.web

Baker, D. W., Wolf, M. S., Feinglass, J., Thompson, J. A., Gazmararian, J. A., & Huang, J.
(2007). Health literacy and mortality among elderly persons. Archives of Internal
Medicine, 167, 1503–1509.

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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

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

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?

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

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

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

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.

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.

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
in the New Media
Landscape

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119

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

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

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

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.

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.

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

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).

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).

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).

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

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.

E-mail

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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http://www.update-software.com/history/clibhist.htm

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340 Health Communication in the New Media Landscape

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http://www.who.int/kms/WHO_EIP_KMS_2006_2

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 h