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A NATIONWIDE FRAMEWORK
FOR SURVEILLANCE OF
CARDIOV ASCULAR AND
CHRONIC LUNG DISEASES
Committee on a National Surveillance System for Cardiovascular and Select Chronic Diseases
Board on Population Health and Public Health Practice
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. 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.
This study was supported by contracts between the National Academy of Sciences and the Department of Health and Human
Services (N01-OD-4-2139). 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.
International Standard Book Number-13: 978-0-309-21216-8
International Standard Book Number-10: 0-309-21216-2
Additional copies of this report are available from The National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Wash -
ington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu.
For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu.
Copyright 2011 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). 2011. A Nationwide Framework for Surveillance of Cardiovascular and
Chronic Lung Diseases. 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 Academy 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 engineers. 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 Engi -
neering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes
the superior achievements of engineers. Dr. Charles M. Vest is president 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 Institute
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 Sciences in 1916 to associate the broad com -
munity 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 gov -
ernment, 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 A NATIONAL SURVEILLANCE SYSTEM FOR
CARDIOVASCULAR AND SELECT CHRONIC DISEASES
Elizabeth Barrett-Connor (Chair), Distinguished Professor and Chief, Division of Epidemiology, University
of California San Diego
John Z. Ayanian, Professor of Medicine and Health Care Policy, Harvard Medical School; Professor of Health
Policy and Management, Harvard School of Public Health; Director, Harvard Medical School Fellowship
in General Medicine and Primary Care; Director, Harvard Catalyst Health Disparities Research Program,
Harvard Medical School
E. Richard Brown, Professor of Health Services and Community Health Sciences, School of Public Health,
University of California Los Angeles; Director, UCLA Center for Health Policy Research; Principal
Investigator, California Health Interview Survey
David B. Coultas, Vice President for Clinical and Academic Affairs; Professor and Chair, Department of
Medicine, University of Texas Health Science Center at Tyler
Charles K. Francis, Clinical Professor of Medicine, Cardiology Division, Department of Medicine, Robert
Wood Johnson Medical School
Robert J. Goldberg, Professor and Director, Division of Epidemiology of Chronic Diseases and Vulnerable
Populations, University of Massachusetts Medical School
Lawrence O. Gostin, Linda D. and Timothy J. O’Neill Professor of Global Health Law, Georgetown
University; Director, World Health Organization Collaborating Center on Public Health Law and Human
Rights
Thomas E. Kottke, Medical Director for Evidence-Based Health, HealthPartners; Senior Clinical Investigator,
HealthPartners Research Foundation; Professor of Medicine, University of Minnesota; Cardiologist,
Regions Hospital Heart Center, HealthPartners Medical Group
Elisa T. Lee, George Lynn Cross Research Professor of Biostatistics and Epidemiology; Director, Center for
American Indian Health Research, University of Oklahoma Health Sciences Center
David M. Mannino, Professor and Director, Pulmonary Epidemiology Research Laboratory, University of
Kentucky College of Public Health
K. M. Venkat Narayan, Ruth and O.C. Hubert Professor of Global Health and Epidemiology, Rollins School
of Public Health, Emory University; Professor of Medicine, School of Medicine, Emory University
Sharon-Lise T. Normand, Professor of Health Care Policy (Biostatistics), Department of Health Care Policy,
Harvard Medical School; Professor of Biostatistics, Department of Biostatistics, Harvard School of Public
Health
David J. Pinsky, J. Griswold Ruth, M.D., & Margery Hopkins Ruth Professor of Internal Medicine; Professor
of Molecular and Integrative Physiology; Chief, Cardiovascular Medicine; Director, Cardiovascular Center,
University of Michigan
Lorna Thorpe, Associate Professor and Program Director, Epidemiology and Biostatistics Program, City
University of New York School of Public Health at Hunter College
William M. Tierney, Chancellor’s Professor and Sam Regenstrief Professor of Health Services Research,
Indiana University School of Medicine; President and CEO, Regenstrief Institute, Inc.
Paul J. Wallace, The Lewin Group, Senior Vice President and Director, Center for Comparative Effectiveness
Research
Study Staff
Lyla M. Hernandez, Staff Director
Nora Hennessy, Associate Program Officer
Suzanne Landi, Senior Project Assistant (until November 1, 2010)
Angela Martin, Senior Project Assistant (beginning November 1, 2010)
Rose Marie Martinez, Director, Board on Population Health and Public Health Practice
v
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Reviewers
This report has been reviewed in draft form by individuals 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 process. We wish to thank the following individuals for their review of
this report:
Robert Califf, Duke University Medical Center
Paul Citron, Retired, Medtronic, Inc.
Kevin A. Fiscella, University of Rochester School of Medicine and Dentistry
Lewis H. Kuller, University of Pittsburgh
Elizabeth Martinez, Massachusetts General Hospital
James Mold, University of Oklahoma Health Science Center
Jonathan Samet, University of Southern California
Stephen Sidney, Kaiser Permanente
Although the reviewers listed above have provided many constructive comments and suggestions, they were
not asked to endorse the final draft of the report before its release. The review of this report was overseen by
Patricia Buffler, University of California, Berkeley. Appointed by the Institute of Medicine, she was 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 authors and the institution.
vii
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Acknowledgments
This report was made possible by support of the sponsors of this study, the National Heart, Lung, and Blood
Institute (NHLBI) of the National Institutes of Health and the Division for Heart Disease and Stroke Prevention of
the Centers for Disease Control and Prevention (CDC). The committee wishes to express special appreciation to
Jean Olson of NHLBI and Robert Merritt of CDC who unfailingly responded to numerous questions and requests
for information.
The work of the committee was aided by the valuable testimony and advice of many knowledgeable and
experienced individuals. These individuals are: Manal J. Aboelata, Prevention Institute; Toni Alterman, National
Institute for Occupational Safety and Health; R. Graham Barr, Columbia University; Diane Bild, NHLBI;
Gerard Criner, Temple University Hospital; Alfredo Czerwinski, J. Glynn & Company; Helen Darling,
National Business Group on Health; Majid Ezzati, Harvard University; Lark Galloway-Gilliam, Community
Health Councils; David Goff, Wake Forest University; Lisa Harris, National Association of Public Hospitals and
Health Systems; Anne Kelsey Lamb, Public Health Institute; Elizabeth Lancet, American Lung Association; Ali
Mokdad, University of Washington; Thomas Reilly, Centers for Medicare & Medicaid Services; Steve Sidney,
Kaiser Permanente; Tyler Smith, Department of Defense; Edward Sondik, National Center for Health Statistics;
Paul Varosy, University of Colorado; Mark Veazie, Indian Health Service; and Janet Wright, American College
of Cardiology.
The committee also wishes to thank the individuals who graciously responded to requests for information
about data collection systems. These individuals are: Sonia Angell, New York City Department of Health and
Mental Hygiene; Alice Arnold, University of Washington; Susie Baldwin, Los Angeles County Department
of Health; Jennifer Cartland, Children’s Memorial Research Center; Nathaniel Cobb, Indian Health Service;
Peter Damiano, University of Iowa; Ann Elixhauser, Agency for Healthcare Research and Quality; Paul Garbe,
National Center for Environmental Health; Linda Geiss, CDC; Suzanne Hallquist, University of North Carolina;
Ken Huelskamp, American College of Cardiology; Susan Jack, National Center for Health Statistics; Laura
Kann, CDC; Nora Keenan, CDC; Russell Luepker, University of Minnesota; Greg Pawlson, National Committee
for Quality Assurance; Sharina Person, University of Alabama; Randel Plant, COPD Foundation; Veronique
Roger, Mayo Clinic College of Medicine; Wayne Rosamond, University of North Carolina; Esta Shindler,
Framingham Heart Study; Jane Sisk, National Center for Health Statistics; and Paula Yoon, CDC.
While we have tried to list all the individuals who provided input, it is possible that we have overlooked
someone and, if that is so, we apologize.
ix
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Contents
SUMMARY 1
1 INTRODUCTION 11
Surveillance, 12
Context, 13
Cardiovascular Disease, 13
Lung Disease Surveillance, 15
Study Charge, 15
Committee Approach, 16
Report Contents, 16
References, 17
2 CARDIOVASCULAR DISEASE 19
Epidemiology, 19
Prevalence and Incidence of Cardiovascular Disease, 19
Mortality Due to Cardiovascular Disease, 21
Costs of Cardiovascular Disease, 22
Prevention and Treatment, 24
Primary Prevention, 24
Secondary Prevention, 26
Treatment and Intervention of Clinically Manifest Disease, 28
Conclusion, 29
References, 30
3 CHRONIC LUNG DISEASE 33
Definition, 33
Epidemiology, 34
Prevention and Treatment, 34
Primary Prevention, 35
xi
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xii CONTENTS
Early Detection and Intervention, 36
Treatment of Diagnosed Disease, 37
Role of Surveillance, 41
References, 44
4 HEALTH DISPARITIES 51
Why Should Health Disparities Be Measured?, 51
Evidence of the Need for Ongoing Surveillance of Health Disparities, 52
Age and Gender, 52
Race and Ethnicity, 54
Nativity and Immigration, 55
Geography, Residence, and Environment, 55
Socioeconomic Factors, 57
Priorities for Surveillance of Healthcare Disparities, 58
Primary Prevention, 58
Secondary Prevention, 58
Conclusion, 59
References, 60
5 EXISTING SURVEILLANCE DATA SOURCES AND SYSTEMS 65
Introduction, 65
Data Collection Efforts, 66
Surveys, 66
Registries, 74
Cohort Studies, 76
Health Services Data, 79
Vital Statistics, 83
International Chronic Disease Surveillance, 84
Conclusion, 86
References, 86
6 LEVELS OF SURVEILLANCE AND EMERGING DATA SOURCES 91
Levels and Uses of Surveillance, 91
Emerging Sources of Surveillance Data, 94
Emerging Provider-Supported Data Sources for Surveillance: Registries, Electronic Health Records, 95
Data from Patients: Potential Use in Surveillance, 99
Developing Systems, 102
References, 104
7 USING SURVEILLANCE DATA FOR ACTION 107
Building a Framework, 109
Setting the Foundation, 109
Measures and Indexes, 111
References, 117
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xiii
CONTENTS
APPENDIXES
APPENDIX A: Contents 121
APPENDIX A: Data Collection Approaches 123
APPENDIX B: International Studies of Cardiovascular Disease and Chronic Obstructive Lung Disease 175
APPENDIX C: Committee Biosketches 181
TABLES
S-1 Levels and Users of Decision Making, 5
2-1 Mortality per 100,000 in 2007 Due to Cardiovascular Disease by Gender and Race/Ethnicity, 21
2-2 2007 Coronary Heart Disease Death Rates per 100,000 People by Gender and Race/Ethnicity, 21
2-3 2006 Stroke Death Rates per 100,000 People by Gender and Race/Ethnicity, 22
3-1 Questions and Conclusions on Screening for Chronic Obstructive Pulmonary Disorder (COPD) from U.S.
Preventive Services Task Force, 36
6-1 Levels and Users of Decision Making, 93
FIGURES
S-1 Framework for a national surveillance system for cardiovascular and chronic lung diseases, 7
4-1 Conceptual model and data sources for Healthy Environments Partnership: Social and physical environmental
factors and disparities in cardiovascular risk, 53
7-1 Framework for a national surveillance system for cardiovascular and chronic lung diseases, 110
7-2 Traditional and evolving data sources for surveillance, 113
BOX
4-1 Social Environment That Can Initiate and Sustain Disparities in Health, 57
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