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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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