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LIVING WELL
WITH CHRONIC ILLNESS
A Call for Public Health Action
Committee on Living Well with Chronic Disease: Public Health Action to
Reduce Disability and Improve Functioning and Quality of Life
Board on Population Health and Public Health Practice
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THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, NW • Washington, DC 20001
NOTICE: The project that is the subject of this report was approved by the Governing
Board of the National Research Council, whose members are drawn from the councils of
the National Academy of Sciences, the National Academy of Engineering, and the Institute
of Medicine. The members of the committee responsible for the report were chosen for their
special competences and with regard for appropriate balance.
This study was supported by Contract No. DP000607 between the National Academy of
Sciences and the Arthritis Foundation, and Contract No. 200-2005-13434, TO# 30 between
the National Academy of Sciences and the Centers for Disease Control and Prevention. Any
opinions, findings, conclusions, or recommendations expressed in this publication are those
of the author(s) and do not necessarily reflect the view of the organizations or agencies that
provided support for this project.
Library of Congress Cataloging-in-Publication Data
Living well with chronic illness : a call for public health action / Committee on Living Well
with Chronic Disease: Public Health Action to Reduce Disability and Improve Functioning and
Quality of Life, Board on Population Health and Public Health Practice, Institute of Medicine
of the National Academies.
p. ; cm.
Includes bibliographical references.
ISBN 978-0-309-22127-6 (pbk.) — ISBN 978-0-309-22128-3 (pdf)
I. Institute of Medicine (U.S.). Committee on Living Well with Chronic Disease: Public Health
Action to Reduce Disability and Improve Functioning and Quality of Life.
[DNLM: 1. Chronic Disease—prevention & control. 2. Health Policy. 3. Population
Surveillance. 4. Quality of Life. WT 30]
362.1—dc23
2012012233
Additional copies of this report are available from the National Academies Press, 500 Fifth
Street, NW, Keck 360, Washington, DC 20055; (800) 624-6242 or (202) 334-3313; http://
www.nap.edu.
For more information about the Institute of Medicine, visit the IOM home page at: www.
iom.edu.
Copyright 2012 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures
and religions since the beginning of recorded history. The serpent adopted as a logotype by
the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche
Museen in Berlin.
Suggested citation: IOM (Institute of Medicine). 2012. Living well with chronic illness: A call
for public health action. Washington, DC: The National Academies Press.
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“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
— Goethe
Advising the Nation. Improving Health.
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The National Academy of Sciences is a private, nonprofit, self-perpetuating society
of distinguished scholars engaged in scientific and engineering research, dedicated to
the furtherance of science and technology and to their use for the general welfare.
Upon the authority of the charter granted to it by the Congress in 1863, the Acad-
emy has a mandate that requires it to advise the federal government on scientific
and technical matters. Dr. Ralph J. Cicerone is president of the National Academy
of Sciences.
The National Academy of Engineering was established in 1964, under the charter
of the National Academy of Sciences, as a parallel organization of outstanding en-
gineers. It is autonomous in its administration and in the selection of its members,
sharing with the National Academy of Sciences the responsibility for advising the
federal government. The National Academy of Engineering also sponsors engineer-
ing programs aimed at meeting national needs, encourages education and research,
and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi-
dent of the National Academy of Engineering.
The Institute of Medicine was established in 1970 by the National Academy of
Sciences to secure the services of eminent members of appropriate professions in
the examination of policy matters pertaining to the health of the public. The Insti-
tute acts under the responsibility given to the National Academy of Sciences by its
congressional charter to be an adviser to the federal government and, upon its own
initiative, to identify issues of medical care, research, and education. Dr. Harvey V.
Fineberg is president of the Institute of Medicine.
The National Research Council was organized by the National Academy of Sci-
ences in 1916 to associate the broad community of science and technology with the
Academy’s purposes of furthering knowledge and advising the federal government.
Functioning in accordance with general policies determined by the Academy, the
Council has become the principal operating agency of both the National Academy
of Sciences and the National Academy of Engineering in providing services to
the government, the public, and the scientific and engineering communities. The
Council is administered jointly by both Academies and the Institute of Medicine.
Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively,
of the National Research Council.
www.national-academies.org
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COMMITTEE ON LIVING WELL WITH CHRONIC DISEASE:
PUBLIC HEALTH ACTION TO REDUCE DISABILITY AND
IMPROVE FUNCTIONING AND QUALITY OF LIFE
ROBERT B. WALLACE (Chair), University of Iowa, Iowa City
RONALD T. ACKERMANN, Northwestern University Feinberg School
of Medicine, Chicago, IL
KAREN BASEN-ENGQUIST, The University of Texas, MD Anderson
Cancer Center, Houston
BOBBIE A. BERKOWITZ, Columbia University School of Nursing,
New York City
LEIGH F. CALLAHAN, The University of North Carolina at Chapel Hill
RONNI CHERNOFF, Geriatric Research, Education & Clinical Center,
Central Arkansas Veterans Healthcare System, and Arkansas
Geriatric Education Center, University of Arkansas for Medical
Sciences, Little Rock
DAVID B. COULTAS, The University of Texas Health Science Center at
Tyler
SHERITA HILL GOLDEN, Johns Hopkins University School of
Medicine, Baltimore, MD
JEFFREY R. HARRIS, University of Washington School of Public Health,
Seattle
RUSSELL HARRIS, University of North Carolina at Chapel Hill
KATIE B. HORTON, The George Washington University School of
Public Health and Health Services, Washington, DC
M. JEANNE MIRANDA, Center for Health Services Research, University
of California, Los Angeles
MARCIA NIELSEN, Patient Centered Primary Care Collaborative,
Washington, DC
OLUGBENGA G. OGEDEGBE, New York University Lagone Medical
Center, New York City
PATRICK REMINGTON, University of Wisconsin School of Medicine
and Public Health, Madison
DAVID B. REUBEN, David Geffen School of Medicine, University of
California, Los Angeles
MICHAEL SCHOENBAUM, National Institute of Mental Health,
Bethesda, MD
v
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Study Staff
E. LORRAINE BELL, Senior Study Director
PAMELA LIGHTER, Research Assistant
CHELSEA FRAKES, Senior Program Assistant
ANDREW LEMERISE, Research Associate
HOPE HARE, Administrative Assistant
AMY PRZYBOCKI, Financial Associate
ROSE MARIE MARTINEZ, Senior Director, Board on Population
Health and Public Health Practice
vi
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Reviewers
This report has been reviewed in draft form by persons chosen for their
diverse perspectives and technical expertise, in accordance with procedures
approved by the National Research Council’s Report Review Committee.
The purpose of this independent review is to provide candid and critical
comments that will assist the institution in making its published report as
sound as possible and to ensure that the report meets institutional standards
for objectivity, evidence, and responsiveness to the study charge. The review
comments and draft manuscript remain confidential to protect the integrity
of the deliberative process. We wish to thank the following individuals for
their review of this report:
Susan Babey, University of California, Los Angeles, Center for Health
Policy Research
R. Don Blim, Retired Physician Executive
Noreen M. Clark, University of Michigan Center for Managing
Chronic Disease
Christine C. Ferguson, George Washington University School of
Public Health and Health Services
George R. Flores, The California Endowment
Linda P. Fried, Columbia University Joseph L. Mailman School of
Public Health
Patricia A. Ganz, University of California, Los Angeles, Jonsson
Comprehensive Cancer Center
Lisa I. Iezzoni, Harvard Medical School
vii
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viii REVIEWERS
Jerome P. Kassirer, Tufts University School of Medicine
Jeffrey Levi, Trust for America’s Health
Katie Maslow, Institute of Medicine
Bernadette Melnyk, The Ohio State University College of Nursing
David O. Meltzer, The University of Chicago Harris School of Public
Policy Studies
Anne Newman, University of Pittsburgh Graduate School of
Public Health
Marjorie L. Pearson, RAND Health
S. Leonard Syme, University of California, Berkeley, School of
Public Health
Lorna E. Thorpe, CUNY School of Public Health at Hunter College
Ed Wagner, University of Washington School of Public Health and
Community Medicine
Fredric D. Wolinsky, The University of Iowa College of Public Health
Although the reviewers listed above have provided many constructive
comments and suggestions, they were not asked to endorse the conclusions
or recommendations nor did they see the final draft of the report before its
release. The review of this report was overseen by Antonia M. Villarruel,
University of Michigan, and Eric B. Larson, Group Health Research Insti-
tute. Appointed by the National Research Council, they were responsible
for making certain that an independent examination of this report was
carried out in accordance with institutional procedures and that all review
comments were carefully considered. Responsibility for the final content of
this report rests entirely with the authoring committee and the institution.
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Foreword
Chronic illness in America imposes an enormous and growing burden
on individuals, families, communities, and the nation as a whole. An aging
population is one key driver, and rising rates of obesity are making mat-
ters worse. Insufficient physical activity and persistent smoking in about
20 percent of the adult population contribute to the problem. For those
who are living with chronic disease, access to suitable disease management
programs is uneven, disparities among racial and ethnic groups persist, and
shortcomings in the quality of care are all too common.
Public health programs have made important inroads in the preven-
tion of several types of cancer, heart disease, and other chronic conditions.
However, much remains to be done in primary prevention, initial treatment,
and long-term follow-up to deter the onset of disease, reduce the incidence
of complications, and diminish the severity of illness. This report examines
the role of public health services in accomplishing these goals.
Public health systems have a variety of tools that can be brought to
bear on chronic illness. Some are direct public health functions, such as
surveillance and regulation; others involve outreach to patients and families
through education; some entail closer coordination with those who deliver
personal health services; and still others involve enlisting the cooperation
of diverse leaders in the public and private sectors. Despite substantial gaps
in knowledge and insufficient resources, public health has the capacity to
help reduce, manage, and control chronic diseases. This report shows how.
Coping with chronic illness is not America’s challenge alone. In Septem-
ber 2011, for the first time, the United Nations took up the topic of chronic
diseases as a principal theme at a plenary gathering. The rising burden of
ix
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x FOREWORD
chronic disease affects countries at every position on the economic spec-
trum. Each has much to learn from others, recognizing that differences in
culture, conditions, and circumstances will demand distinctive solutions.
We hope that the report that follows can help the United States bring new
leadership to mitigating the burden of chronic illness at home and for the
global community.
Harvey V. Fineberg, M.D., Ph.D.
President, Institute of Medicine
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Contents
ABSTRACT xv
SUMMARY 1
INTRODUCTION 21
1 LIVING WELL WITH CHRONIC ILLNESS 27
The Timely Relevance of a Push Toward Living Well with
Chronic Illness, 28
The Population Health Perspective, 29
Chronic Diseases and Their Impact on Health and Function, 30
Doing Something About It, 33
Conclusion, 44
References, 45
2 CHRONIC ILLNESSES AND THE PEOPLE WHO LIVE
WITH THEM 51
Introduction, 51
The Spectrum of Chronic Illnesses: Differences in Time
Course/Chronicity, Health Burden, and Consequences, 52
The Spectrum of Chronic Illnesses: Common Consequences, 57
Exemplar Chronic Illnesses, 68
Who Are the People with Chronic Illnesses?, 90
Recommendations 1–5, 97
xi
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xii CONTENTS
Chronic Illness and the Nation’s Health and Economic
Well-Being, 100
Recommendation 6, 104
References, 105
3 POLICY 119
Introduction, 119
Contextualizing Health Policy Interventions: Frieden’s Pyramid, 124
The Affordable Care Act, 132
Health in All Policies and Health Impact Assessments, 137
Conclusion, 140
Recommendations 7–8, 141
References, 148
4 COMMUNITY-BASED INTERVENTION 151
Introduction, 151
Preventive Interventions, 151
Monitoring, Evaluation, and Research, 170
Conclusion, 174
Recommendations 9–12, 175
References, 176
5 SURVEILLANCE AND ASSESSMENT 187
Introduction, 187
Conceptual Framework for Chronic Disease Surveillance, 189
Use of Surveillance to Inform Public Policy Decisions, 194
Current Data Sources and Surveillance Methods, 195
Public Health Surveillance System Integration, 207
Future Data Sources, Methods, and Research Directions, 213
Conclusion, 220
Recommendations 16–17, 222
References, 222
6 INTERFACE OF THE PUBLIC HEALTH SYSTEM, THE
HEALTH CARE SYSTEM, AND THE NON–HEALTH
CARE SECTOR 229
Introduction, 229
Public Health System Structures and Approaches, 230
Health Care System Approaches, 238
The Community-Based and Non–Health Care Sector, 244
Conclusion, 250
Recommendations 13–15, 252
References, 253
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xiii
CONTENTS
7 THE CALL FOR ACTION 257
References, 260
APPENDIXES
A Improving Recognition and Quality of Depression Care in
Patients with Common Chronic Medical Illnesses,
261
Wayne J. Katon
B New Models of Comprehensive Health Care for People with
Chronic Conditions, Chad Boult and Erin K. Murphy 285
C Agendas of Public Meetings Held by the Committee 319
D Committee Biographies 323
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Abstract
The report Living Well with Chronic Illness: A Call for Public Health
Action is a guide for immediate and precise action to reduce the burden of
all forms of chronic illness through the development and implementation of
cross-cutting and coordinated strategies to help Americans live well.
The committee developed original and incorporated established con-
ceptual models to provide a framework for the report. The report de-
scribes the economic consequences of chronic illnesses for individuals,
their families, the health care system, and the nation; provides a concerted
approach to understanding the dimensions of prevention as they relate to
chronic disease control in the community; highlights the populations that
experience chronic illnesses disproportionately; considers a wide spectrum
of chronic diseases and their clinical stages, their patterns and anticipated
course, and the common or cross-cutting burden and consequences of living
with chronic illness; details how to improve surveillance systems to better
assess and address chronic illnesses; describes the role of public health and
community-based interventions for chronic disease management and con-
trol; considers the importance of federal policy in enhancing chronic disease
control; and highlights the critical role of aligning public health, health care
system, and non–health care community services as a system change to bet-
ter control chronic illnesses.
The committee concludes that all chronic illnesses have the potential
to reduce population health by limiting individual capacity to live well.
Maintaining or enhancing quality of life for individuals living with chronic
illnesses has not been given the attention it needs by health care funders,
health systems, policy makers, and public health programs and agencies.
xv
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xvi ABSTRACT
There are domains of chronic disease management from a public health
perspective for which there is not enough research or program evaluation.
Much more needs to be done.
The committee does not recommend a specific set of diseases on which
to focus for public health action. Instead, we describe nine exemplar dis-
eases, health conditions, and impairments that have notable implications
for the nation’s health and economy; impact quality of life and functional
status; cut across many chronic illnesses; complicate and/or increase risks
for multiple chronic conditions (MCCs); and impact the community, fami-
lies, and caregivers of those with chronic illnesses. Each represents an im-
portant challenge to public health. Therefore, the committee recommends
that a variety of illnesses be selected for public health action based on a
planning process that emphasizes the inclusion of chronic illnesses with
cross-cutting clinical, functional, and social implications that impact the
individuals who live with them. The committee provides specific criteria
for illness selection.
The committee concludes that there are many intervention issues and
opportunities related to the prevention and management of MCCs. The
committee recommends that surveillance techniques more likely to capture
MCCs effectively be explored, and that public health interventions aimed
at preventing or altering the course of new illness occurrences in individuals
with MCCs, or who are at risk for them, be tested and evaluated. Also, the
committee recommends that the states be supported to develop compre-
hensive population-based strategic plans that focus on the management of
chronic illnesses among their residents, including community-based efforts
to address the health and social needs of individuals living with chronic
illnesses and experiencing disparities in health outcomes.
The committee recommends greater use of new and emerging economic
methods in making policy decisions that will promote living well with
chronic illnesses. In addition, the committee recommends that evidenced-
based interventions that help individuals with chronic illness live well be
widely disseminated, particularly in communities with disparities in health
outcomes. Barriers for translating research into practice need to be identi-
fied and resolved. Furthermore, the committee recommends that federal,
state, and privately funded programmatic and research initiatives in health
include an evaluation of their effect on health-related quality of life and
functional status, particularly in persons with chronic illness. The com-
mittee also recommends a Health in All Policies approach, with Health
Impact Assessments as a promising practice to be piloted and evaluated for
a set of major federal legislation, regulations, and policies for its impact on
health, health-related quality of life and functional status for individuals
with chronic illness, and relevant efficiencies.
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xvii
ABSTRACT
Surveillance systems need to be improved to assess health-related qual-
ity of life and functional status and inform the planning, development,
implementation, and evaluation of public health policies, programs, and
interventions relevant to individuals living with chronic illness. There-
fore, the committee recommends that a standing national work group be
established to oversee and coordinate multidimensional chronic illnesses
surveillance activity.
To improve living well with chronic illness, the committee recommends
the testing and evaluation of existing, emerging, and/or new models of
chronic disease care that align the resources of community-based organiza-
tions, the health care delivery system, employers and businesses, the media,
and the academic community. Additional important recommendations are
presented in this report regarding research and evaluation, interventions,
policies, and surveillance to promote public health action around chronic
illness.
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