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Examining the HEALTH DISPARITIES RESEARCH PLANof the NATIONAL INSTITUTES OF HEALTH Unfinished Business Committee on the Review and Assessment of the NIH's Strategic Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities Board on Health Sciences Policy Gerald E. Thomson, Faith Mitchell, Monique B. Williams, Editors THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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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. 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. NO1-OD-4-2139 between the National Academy of Sciences and National Center on Minority Health and Health Disparities, U.S. Department of Health & Human Services. 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 Examining the health disparities research plan of the National Institutes of Health : unfinished business / Committee on the Review and Assessment of the NIH's Strategic Research Plan And Budget to Reduce and Ultimately Eliminate Health Disparities, Board on Health Sciences Policy ; Gerald E. Thomson, Faith Mitchell, Monique Williams, editors. p. ; cm. Includes bibliographical references and index. ISBN 0-309-10121-2 (hardback) -- ISBN 0-309-65775-X (PDFs) 1. Health services accessibility--United States. 2. Social medicine--United States. 3. Medical policy--United States. 4. Medical care--United States--Evaluation. I. Thomson, Gerald E. II. Mitchell, Faith, 1952- . III. Williams, Monique. IV. National Research Council (U.S.). Committee on the Review and Assessment of the NIH's Strategic Research Plan And Budget to Reduce and Ultimately Eliminate Health Disparities. [DNLM: 1. National Institutes of Health (U.S.) 2. Health Services Research--United States. 3. Cultural Diversity--United States. 4. Health Services Accessibility--United States. 5. Program Development--United States. 6. Research Design--United States. 7. Socioeconomic Factors--United States. W 84 AA1 E96 2006] RA418.3.U6E93 2006 362.10425--dc22 2006011067 Additional copies of this report are available for sale from the National Academy Press, 500 Fifth Street, N.W., Lockbox 285, Washington, D.C. 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 2006 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.

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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 Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf 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 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. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org iv

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COMMITTEE ON THE REVIEW AND ASSESSMENT OF THE NIH'S STRATEGIC RESEARCH PLAN AND BUDGET TO REDUCE AND ULTIMATELY ELIMINATE HEALTH DISPARITIES GERALD E. THOMSON (Chair), Lambert & Sonneborn Professor of Medicine, Emeritus, Senior Associate Dean, Emeritus, Columbia University Col- lege of Physicians and Surgeons, New York, NY JOHN F. ALDERETE, Professor, Department of Microbiology, University of Texas Health Science Center at San Antonio, San Antonio, TX MOON CHEN, JR., Professor, Department of Epidemiology and Preven- tive Medicine, University of California, Davis, School of Medicine, Associate Director for Cancer Prevention and Control (Population Sci- ences), University of California, Davis, CA HARVEY R. COLTEN, Vice President & Senior Associate Dean, Aca- demic Affairs, Columbia University, Health Sciences and College of Physicians & Surgeons, New York, NY ROBERT A. HIATT, Professor, Epidemiology and Biostatistics, UCSF Comprehensive Cancer Center, Population Sciences, San Francisco, CA SHERMAN JAMES, Susan B. King Professor of Public Policy, Duke Uni- versity, Durham, NC ICHIRO KAWACHI, Professor of Social Epidemiology, Director, Harvard Center for Society and Health, Harvard School of Public Health, Bos- ton, MA CLAUDE LENFANT, President, World Hypertension League, Gaithers- burg, MD SPERO M. MANSON, Professor of Psychiatry, Head, American Indian and Alaska Native Programs, University of Colorado at Denver and Health Sciences Center, Denver, CO JEANNE MIRANDA, Professor in Residence, University of California, Department of Psychiatry and Biobehavioral Science, Los Angeles, CA KYU RHEE, Medical Director, Upper Cardozo Community Health Center, Washington, DC LYNNE D. RICHARDSON, Associate Professor, Emergency Medicine, Director, Emergency Medicine Residency, Mount Sinai School of Medicine, Department of Emergency Medicine, New York, NY ANTONIA M. VILLARRUEL, Professor, Director, Center for Health Pro- motion, University of Michigan, School of Nursing, Ann Arbor, MI DAVID WILLIAMS, Harold Cruse Collegiate Professor of Sociology, Se- nior Research Scientist, Institute for Social Research, University of Michigan, Ann Arbor, MI v

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HEALTH SCIENCES POLICY BOARD LIAISON MARTHA N. HILL, Dean and Professor, The Johns Hopkins University, School of Nursing, Baltimore, MD IOM PROJECT STAFF FAITH MITCHELL, Senior Program Officer MONIQUE B. WILLIAMS, Program Officer THELMA L. COX, Senior Program Assistant IOM Staff ANDREW M. POPE, Director, Board on Health Sciences Policy AMY HAAS, Administrative Assistant CARLOS GABRIEL, Financial Associate (until May 2005) DAVID CODREA, Financial Associate vi

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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 ap- proved by the National Research Council's (NRC's) Report Review Committee. The purpose of this independent review is to provide candid and critical com- ments 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: PAULA A. BRAVEMAN, University of California, San Francisco H. JACK GEIGER, City University of New York Medical School BRADFORD GRAY, The Milbank Quarterly, The Urban Institute RUTH HANFT, James Madison University ROBERT A. LOWE, Oregon Health & Science University NICOLE LURIE, The RAND Corporation JOHN E. MAUPIN, Meharry Medical College RUBENS J. PAMIES, University of Nebraska Medical Center TIMOTHY SIZE, Rural Wisconsin Health Cooperative Although the reviewers listed above have provided many constructive com- ments and suggestions, they were not asked to endorse the conclusions or recom- mendations nor did they see the final draft of the report before its release. The review of this report was overseen by NEAL VANSELOW, Tulane University, vii

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viii REVIEWERS Professor Emeritus, and DAVID KINDIG, Wisconsin Public Health and Health Policy Institute, University of Wisconsin-Madison. Appointed by the NRC and Institute of Medicine, 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 care- fully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Preface Although the overall health of Americans has improved considerably over the past several decades, the health of racial and ethnic minorities and other populations continues to lag behind that of whites. For decades, there have been declarations identifying correction of health disparities as a national priority but progress has been slow, and the suffering, disability, and death continue. If the gaps between populations persist and some minority populations continue to grow disproportionately, within several decades most Americans will be mem- bers of populations at risk for disparate health. Improving the situation requires much better understanding of health dispari- ties. The National Institutes of Health (NIH) has supported and conducted exten- sive research related to minority health and health disparities. The NIH health disparities research effort was addressed by Congress with the "Minority Health and Health Disparities Research and Education Act of 2000." Among its provi- sions, the legislation called for establishing the National Center on Minority Health and Health Disparities (NCMHD) with two broad areas of responsibility: first, administration of extensive grants and awards aimed at strengthening the country's personnel and institutional capacities to conduct research on minority health and health disparities; and second, coordination of all health disparities research across NIH together with oversight of the development and implementa- tion of an NIH-wide strategic plan for health disparities research. NCMHD was established in 2000 and, in 2004, asked the Institute of Medicine to assess the adequacy and coordination of the Strategic Plan that had been developed. The study committee began the review late in 2004 with completion targeted for late 2005. The extensive Strategic Plan features three broad research, research capacity, and outreach goals along with detailed objectives. Included are the individual plans of 25 of the 27 Institutes and Centers, as well as 2 Offices within the Office ix

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x PREFACE of the Director. As a catalogue of ongoing and intended health disparities re- search activity across NIH, it is impressive. As a strategy in a health disparities research campaign, it is a beginning. To be sure, the effort faces strong challenges. The first is the nature of the research itself. The range of diseases and conditions for which there are differ- ences spans virtually all biomedical disciplines. There are complex, interrelated social, economic, behavioral, health care, and other environmental aspects--and the differences, their features, and the roles of contributing factors vary among affected populations and subpopulations. The review committee sees the opportunity and need for NIH to focus even more on health disparities as a research entity and move knowledge and under- standing forward as no other agency or setting can. Along with understanding the biomedical aspects of diseases and conditions that are the manifestations of health disparities, there is need to know more about the contributions and interactions of core conditions and factors that may be common to the genesis of disparate health. The NIH should take leadership in helping to understand, further define, and develop methodology regarding health disparities research. As well, given the particular importance of the translation of new information into best practices in the care of patients, there is opportunity to better understand, design, and assess communication of health disparities information to health professionals and the public as a core NIH effort with much to be learned and applied. A second challenge has to do with coordination and management of such an extensive plan and program across NIH where the Institutes and Centers have a degree of autonomy that can make it difficult to effect concerted programs. The challenge is an example of other efforts to achieve trans-NIH coordination of broad interdisciplinary programs, such as those organized for AIDS, obesity, and neuroscience. The extensive nature of the health disparities research effort re- quires that there be a well-structured effort with ongoing, continuous improve- ment of the plan and program that is the result of extensive involvement from within and from outside of NIH contributing to identification of research needs, assessments, evaluation and priority determinations. Along with central oversight and attention to the detailed aspects of the programs, there must be a broader view and vision and assurance that needed research areas are not neglected. Also, there is the opportunity to bring together and involve much expertise from across NIH and from across the nation to inform the NIH program, its planning, evalu- ation and priorities. The Strategic Plan and its strategy for health disparities research can be strengthened as part of an integrated, cohesive, coordinated trans-NIH program, developed with the best available thought, addressing relevant, prioritized ques- tions and issues with clearly initiated and evaluated programs, and with the production of information which allows the NIH, and the nation, to be assured

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PREFACE xi that needed research on health disparities is being addressed as effectively and expeditiously as possible. Throughout the review, the Committee felt the implications and urgency of the task and brought to the review the utmost devotion and commitment. We are grateful for the expertise and efforts of the staff, including Faith Mitchell, the Project Director, Monique Williams, Program Officer, and Thelma Cox, Senior Program Assistant. Dr. Elias Zerhouni, the Director of NIH, Dr. Raynard Kington, Deputy Di- rector of NIH, and the NIH Office of Budget were forthcoming and most helpful. We are particularly grateful to the NCMHD and its Director, John Ruffin, and the staff for their intense devotion, cooperation and assistance and to the Institutes and Centers which provided valuable information and insights. We are thankful for the cooperation, responses, testimony and other information provided by the Institutes and Centers and Offices within the Office of the Director and those provided by the many distinguished individuals and devoted organizations. Gerald E. Thomson, M.D., Chair Committee on the Review and Assessment of the NIH's Strategic Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities

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Acknowledgments The editors would like to thank several people for their testimony to the Committee: Lawrence Agodoa, Duane Alexander, Barbara Alving, Victoria A. Cargill, Francis D. Chesley, Jr., Gail C. Christopher, Mark Clanton, Gem Daus, Adolph Falcon, Charles Francis, Ren Gonzlez, Garth Graham, Doug Hussey, Carolyn M. Kane, Raynard Kington, Ronny B. Lancaster, Yvonne Maddox, John J. McGowan, Vivian W. Pinn, Winston Price, Griffin Rodgers, Leonard S. Rubenstein, John Ruffin, David Satcher, Allen M. Spiegel, Louis W. Sullivan, Walter W. Williams, Jerome Wilson, and Elias A. Zerhouni. We thank Nancy Adler, Neil R. Powe, Kasisomayajula Viswanath, and Edwina H. Yeung for their background papers that informed the committee's deliberations. Among the IOM staff, special thanks are due to Thelma Cox and Andy Pope. xii

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Contents EXECUTIVE SUMMARY 1 1 INTRODUCTION 15 Congressional Legislation: The Minority Health and Health Disparities Research and Education Act of 2000, 16 Charge to the Committee, 18 Committee Process, 19 Organization of the Report, 20 2 HEALTH DISPARITIES: CONCEPTS, MEASUREMENTS, AND UNDERSTANDING 21 Defining Health Disparities, 24 Measuring Health Disparities, 26 Understanding Health Disparities, 29 Implications for the NIH Research Agenda, 31 3 DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 34 The 2002 and 2004 Strategic Plans, 37 The Strategic Plans of the ICs, 55 Health Disparities as Defined by the Strategic Plan, 57 4 BUDGET AND FINANCES 60 Availability of Budget Information, 60 Interpretation of Budget Information: Definitions and Methods, 60 Incremental Funding for the NIH Minority Health and Health Disparities Research Program, 61 NIH Budget Allocations for Health Disparities, 64 xiii

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xiv CONTENTS 5 THE NATIONAL CENTER ON MINORITY HEALTH AND HEALTH DISPARITIES 72 The NCMHD as a Center, 72 Responsibilities for the Minority Health and Health Disparities Research Program and the Strategic Plan, 76 6 MANAGEMENT OF THE STRATEGIC PLAN AND THE HEALTH DISPARITIES RESEARCH PROGRAM 78 The Challenge of Structuring a Trans-NIH Health Disparities Research Program and Strategic Plan, 78 Coordination of the Strategic Plan and Minority Health and Health Disparities Research, 84 REFERENCES 88 APPENDICES A PUBLIC LAW 106525--NOVEMBER 22, 2000; "Minority Health and Health Disparities Research and Education Act of 2000" 95 B Agendas of Open Meetings 112 C List of Participants Providing Testimony or Written Commentary to the Committee 119 D Overview of Health Disparities, Nancy Adler 121 E Schematic Diagram Showing Differences, Disparities, and Discrimination in Health Care 175 F National Institutes of Health NIH Health Strategic Plan Fiscal Years 20042008, Volume I [Draft] 176 G Public Communications and Its Role in Reducing and Eliminating Health Disparities, Kasisomayajula Viswanath 215 H NIH Committee on Minority Health and Health Disparities Research Definitions and Application Methodology: Final Report (Revised January 2004) 254 I Acronyms 272

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CONTENTS xv J Centers of Excellence Funded by the National Center on Minority Health and Health Disparities, 2005 274 K NCMHD Endowment Program Awardees 277 L Summary of Recommendations 278 M Committee and Staff Biographies 280 INDEX 291

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