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Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, Editors Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care Board on Health Sciences Policy THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, N.W. • Washington, D.C. 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. Support for this project was provided by the Office of Minority Health, U.S. Department of Health and Human Services. Additional support for data collection activities was provided by The Commonwealth Fund and the Henry J. Kaiser Family Foundation. The views presented in this report are those of the Institute of Medicine Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care and are not necessarily those of the funding agencies. Library of Congress Cataloging-in-Publication Data Unequal treatment : confronting racial and ethnic disparities in health care / Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, editors ; Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Board on Health Sciences Policy, Institute of Medicine. p. ; cm. Includes bibliographical references and index. ISBN 0-309-08265-X (hardcover with CD-ROM); ISBN 0-309-08532-2 (hardcover) 1. Discrimination in medical care. 2. Health services accessibility. 3. Minorities—Medical care. 4. Race discrimination. 5. Racism—Cross-cultural stdies. 6. Social medicine. {DNLM: 1. Health Services Accessibility—United States. 2. Ethnic Groups—United States. 3. Minority Groups—United States. 4. Quality of Health Care—United States. WA 300 U515 2002] I. Smedley, Brian D. II. Stith, Adrienne Y. III. Nelson, Alan R. (Alan Ray) IV. Institute of Medicine (U.S.). Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. RA563.M56 U53 2002 352.1′089—dc 21 2002007492 Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, N.W., Box 285, Washington, D.C. 20055. Call (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 2003 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 S haping the Future for 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 govern- ment on scientific and technical matters. Dr. Bruce M. Alberts 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 govern- ment. 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 commu- nities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTH CARE ALAN R. NELSON, M.D., (Chair), retired physician and current Special Advisor to the Chief Executive Officer, American College of Physicians–American Society of Internal Medicine, Washington, DC MARTHA N. HILL, Ph.D., R.N., (Co-Vice Chair), Interim Dean, Professor and Director, Center for Nursing Research, Johns Hopkins University School of Nursing, Baltimore, MD RISA LAVIZZO-MOUREY, M.D., M.B.A., (Co-Vice Chair), Senior Vice President, Health Care Group, Robert Wood Johnson Foundation, Princeton, NJ JOSEPH R. BETANCOURT, M.D., M.P.H., Senior Scientist, Institute for Health Policy, Director for Multicultural Education, Multicultural Affairs Office, Massachusetts General Hospital, Partners HealthCare System, Boston, MA M. GREGG BLOCHE, J.D., M.D., Professor of Law, Georgetown University and Co-Director, Georgetown-Johns Hopkins Joint Program in Law and Public Health, Washington, DC W. MICHAEL BYRD, M.D., M.P.H., Instructor and Senior Research Scientist, Harvard School of Public Health, and Instructor/Staff Physician, Beth Israel Deaconess Hospital, Boston, MA JOHN F. DOVIDIO, Ph.D., Charles A. Dana Professor of Psychology and Interim Provost and Dean of Faculty, Colgate University, Hamilton, NY JOSE ESCARCE, M.D., Ph.D., Senior Natural Scientist, RAND and Adjunct Professor, UCLA School of Public Health, Los Angeles, CA SANDRA ADAMSON FRYHOFER, M.D., M.A.C.P., practicing internist and Clinical Associate Professor of Medicine, Emory University School of Medicine, Atlanta, GA THOMAS INUI, Sc.M., M.D., Senior Scholar, Fetzer Institute, Kalamazoo and Petersdorf Scholar-in-Residence, Association of American Medical Colleges, Washington, DC JENNIE R. JOE, Ph.D., M.P.H., Professor of Family and Community Medicine, and Director of the Native American Research and Training Center, University of Arizona, Tucson, AZ THOMAS McGUIRE, Ph.D., Professor of Health Economics, Department of Health Care Policy, Harvard Medical School, Boston, MA

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CAROLINA REYES, M.D., Vice President, Planning and Evaluation, The California Endowment, Woodland Hills, CA, and Associate Clinical Professor, UCLA School of Medicine, Los Angeles, CA DONALD STEINWACHS, Ph.D., Chair and Professor of the Department of Health Policy and Management, Johns Hopkins School of Hygiene and Public Health, and Director, Johns Hopkins University Health Services Research and Development Center, Baltimore, MD DAVID R. WILLIAMS, Ph.D., M.P.H., Professor of Sociology and Research Scientist, Institute for Social Research, University of Michigan, Ann Arbor, MI HEALTH SCIENCES POLICY BOARD LIAISON GLORIA E. SARTO, M.D., Ph.D., Professor, University of Wisconsin Health, Department of Obstetrics and Gynecology, Madison, WI IOM PROJECT STAFF BRIAN D. SMEDLEY, Study Director ADRIENNE Y. STITH, Program Officer DANIEL J. WOOTEN, Scholar-in-Residence THELMA L. COX, Senior Project Assistant SYLVIA I. SALAZAR, Edward Roybal Public Health Fellow, Congressional Hispanic Caucus Institute IOM STAFF ANDREW M. POPE, Director, Board on Health Sciences Policy ALDEN CHANG, Administrative Assistant CARLOS GABRIEL, Financial Associate PAIGE BALDWIN, Managing Editor COPY EDITOR JILL SHUMAN vi

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REVIEWERS This report has been reviewed in draft form by individuals chosen for their di- verse perspectives and technical expertise, in accordance with procedures ap- proved by the NRC’s Report Review Committee. The purpose of this indepen- dent 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 responsive- ness 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: LU ANN ADAY, Professor of Behavioral Sciences, University of Texas-Houston Science Center, TX JOHN F. ALDERETE, Professor of Microbiology, University of Texas Health Science Center at San Antonio, TX NAIHUA DUAN, Professor-in-Residence, Center for Community Health, UCLA Wilshire Center, Los Angeles, CA DEAN M. HASHIMOTO, Associate Professor, Boston College Law School, Newton, MA SHERMAN A. JAMES, Director, Center for Research on Ethnicity Culture & Health, School of Public Health, University of Michigan, Ann Arbor, MI JEROME P. KASSIRER, Yale University School of Medicine, New Haven, CT WOODROW A. MYERS, Executive Vice President, Wellpoint Health Net- works, Thousand Oaks, CA FRANK A. SLOAN, Director, Center for Health Policy, Law & Management, Duke University, Durham, NC KNOX H. TODD, Adjunct Associate Professor, The Rollins School of Public Health, Emory University School of Medicine, Atlanta, GA WILLIAM A. VEGA, Director, Behavioral and Research Training Institute, Universit of Medicine and Dentistry of New Jersey, New Brunswick, NJ EUGENE WASHINGTON, Professor and Chair, Department of Ob/Gyn & Reproductive Sciences, University of California, San Francisco, CA Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommenda- tions nor did they see the final draft of the report before its release. The review of this report was overseen by HAROLD C. SOX, Editor, Annals of Internal Medicine, Philadelphia, PA, appointed by the Institute of Medicine, and ELAINE L. LARSON, Professor of Pharmaceutical & Therapeutic Research, Columbia Uni- versity School of Nursing, New York, NY. Appointed by the NRC’s Report Re- view Committee, these individuals were responsible for making certain that an independent examination of this report was carried out in accordance with insti- tutional 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. vii

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Acknowledgments Many individuals and groups made important contributions to the study committee’s process and to this report. The committee wishes to thank all of these individuals and organizations, but recognizes that at- tempts to identify all and acknowledge their contributions would require more space than is available in this brief section. To begin, the committee would like to thank the sponsors of this report. Core funds for the committee’s work were provided by the Office of Minority Health, U.S. Department of Health and Human Services, in response to a Congressional request. The committee thanks Joan Jacobs and Olivia Carter-Pokras of this office, who served as the Task Order Officers on this grant. Additional funding for data collection efforts was provided by the Henry J. Kaiser Family Foundation of Menlo Park, Cali- fornia, and The Commonwealth Fund, a New York City-based private, independent foundation. The committee thanks Marsha Lillie-Blanton of the Henry J. Kaiser Family Foundation, and Karen Scott Collins and Dora L. Hughes of The Commonwealth Fund for their support. The committee found the perspectives of many individuals and or- ganizations to be valuable in understanding the complex problem of racial and ethnic disparities in healthcare. Several individuals and orga- nizations provided important information at open workshops of the committee. These include, in order of appearance, Nathan Stinson, Ph.D., M.D., M.P.H., Deputy Assistant Secretary for Minority Health, U.S. Department of Health and Human Services; Charles Dujon, Legis- lative Assistant, Office of the Honorable Jessie Jackson, Jr., U.S. House ix

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x ACKNOWLEDGMENTS of Representatives; Rodney Hood, M.D., National Medical Association; Adolph Falcon, M.P.P., National Alliance for Hispanic Health; Jeanette Noltenius, Ph.D., Latino Council on Alcohol and Tobacco, representing the Multicultural Action Agenda for Eliminating Health Disparities; Yvonne Bushyhead, J.D., and Beverly Little Thunder, R.N., National Indian Health Board; H. Jack Geiger, M.D., City University of New York; Deborah Danoff, M.D., Assistant Vice President, Division of Medical Education, American Association of Medical Colleges; Paul M. Schyve, M.D., Senior Vice Presi- dent, Joint Commission on Accreditation of Healthcare Organizations; Sindhu Srinivas, M.D., President, American Medical Student Association; Mary E. Foley, R.N., MS, President, American Nurses Association; Randolph D. Smoak, Jr., M.D., President, American Medical Association; Terri Dickerson, Assistant Staff Director, U.S. Commission on Civil Rights; Carolyn Clancy, M.D., Agency for Health Care Research and Quality; James Youker, M.D., President, American Board of Medical Specialties; Ray Werntz, Consumer Health Education Council; Vickie Mays, Ph.D., Chair, National Committee on Vital and Health Statistics Subcommittee on Populations; Robyn Nishimi, Ph.D., Chief Operating Officer, National Quality Forum; Lovell Jones, Ph.D., Intercultural Cancer Council; David Satcher, M.D., Ph.D., U.S. Surgeon General; Richard Epstein, J.D., James Parker Hall Distinguished Service Professor of Law, University of Chicago Law School; Clark C. Havighurst, J.D., Wm. Neal Reynolds Professor of Law, Duke University School of Law; Marsha Lillie-Blanton, Dr. P.H., Vice President in Health Policy, The Henry J. Kaiser Family Foundation; June O’Neill, Ph.D., Director, Center for the Study of Business and Gov- ernment, Baruch College of Public Affairs; Thomas Perez, J.D., M.P.P., Assistant Professor and Director of Clinical Law Programs, University of Maryland Law School; and Thomas Rice, Ph.D., Professor and Vice-Chair, Department of Health Services, UCLA School of Public Health. The committee also gratefully acknowledges the contributions of the many individuals who participated as members of one of four liaison panels, which were assembled to serve as a resource to the committee, to provide advice and guidance in identifying key information sources, to provide recommendations to the study committee regarding intervention strategies, and to ensure that relevant consumer and professional per- spectives were represented. These individuals are listed in Appendix A. Similarly, the committee thanks the many individuals who provided in- put to study staff during “roundtable discussions” held at the Asian and Pacific Islander American Health Forum (APIAHF) conference on April 27 and 28, 2001, and the Indian Health Service (IHS) Research Conference on April 22 and 23, 2001. The committee extends its gratitude to Gem Daus of APIAHF and Leo Nolan, William Freeman, and Cecelia Shorty of IHS for their assistance in arranging these roundtable discussions.

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xi ACKNOWLEDGMENTS Data from focus group discussions involving racial and ethnic minor- ity healthcare consumers and healthcare providers helped to put a “hu- man face” on the problem of disparities in care. The committee extends its gratitude to the many individuals who participated in these focus group discussions and shared their experiences, which included both posi- tive as well as negative experiences in healthcare systems. These focus groups were convened and conducted by Westat, Inc., and a summary of the major themes is presented in Appendix D. Tim Edgar and Meredith Grady of Westat deserve special thanks for their work to convene these groups and provide a synthesis of the data. Joe R. Feagin of the University of Florida, Nicole Lurie of RAND, Vickie Mays of UCLA, and Richard Allen Williams of UCLA and the Minority Health Institute served as technical reviewers on aspects of the report. These individuals provided technical comments only, and are not respon- sible for the final content of the report. Ruth Zambrana of the University of Maryland also provided valuable assistance regarding health care needs of Hispanic populations, and Elizabeth Marchak of the Cleveland Plain Dealer provided the study committee with informative and well-researched news articles from her research on healthcare disparities. Michael Sapoznikow designed the graphic illustration that appears as Figure 3-1 in Chapter 3. The committee thanks each of these individuals. Finally, the committee would also like to thank the authors whose paper contributions contributed to the evidence base that the committee examined. These include H. Jack Geiger of the City University of New York; W. Michael Byrd and Linda A. Clayton of the Harvard School of Public Health; Lisa A. Cooper and Debra L. Roter of Johns Hopkins Uni- versity; Jennie R. Joe, with the assistance of Jacquetta Swift and Robert S. Young of the Native American Research and Training Center, University of Arizona; Mary-Jo DelVecchio Good, Cara James, Byron J. Good, and Anne E. Becker, Department of Social Medicine, Harvard Medical School; Sara Rosenbaum of the School of Public Health and Health Services, George Washington University; Thomas Perez of the University of Mary- land Law School; Madison Powers and Ruth Faden of the Kennedy Insti- tute of Ethics, Georgetown University; and Thomas Rice of the Depart- ment of Health Services, UCLA School of Public Health.

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Contents SUMMARY 1 Abstract, 1 Study Charge and Committee Assumptions, 3 Evidence of Healthcare Disparities, 5 Racial Attitudes and Discrimination in the United States, 6 Assessing Potential Sources of Disparities in Care, 7 Interventions to Eliminate Racial and Ethnic Disparities in Healthcare, 13 Data Collection and Monitoring, 21 Needed Research, 22 1 INTRODUCTION AND LITERATURE REVIEW 29 Study Charge and Committee Assumptions, 30 The Relationship Between Racial and Ethnic Disparities in Health Status and Healthcare, 35 Why Are Racial and Ethnic Disparities in Healthcare Important?, 36 Evidence of Racial and Ethnic Disparities in Healthcare, 38 Summary, 77 2 THE HEALTHCARE ENVIRONMENT AND ITS RELATION TO DISPARITIES 80 The Health, Health Insurance, and Language Status of Racial and Ethnic Minority Populations, 81 Racial Attitudes and Discrimination in the United States, 90 The Context of Healthcare Delivery for Racial and Ethnic Minority Patients—An Historical Overview, 102 xiii

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xiv CONTENTS A Brief History of Legally Segregated Healthcare Facilities and Contemporay De Facto Segregation, 103 The Settings in Which Racial and Ethnic Minorities Receive Healthcare, 108 The Healthcare Professions Workforce in Minority and Medically Underserved Communities, 114 The Participation of Racial and Ethnic Minorities in Health Professions Education, 120 Summary, 123 3 ASSESSING POTENTIAL SOURCES OF RACIAL AND ETHNIC DISPARITIES IN CARE: PATIENT- AND SYSTEM-LEVEL FACTORS 125 A Model: Sources of Healthcare Disparities, 126 Patient-Level Variables—Preferences, Mistrust, Treatment Refusal, Biological Differences, and Overuse of Services, 131 Health Systems-Level Variables, 140 Summary, 159 4 ASSESSING POTENTIAL SOURCES OF RACIAL AND ETHNIC DISPARITIES IN CARE: THE CLINICAL ENCOUNTER 160 Medical Decisions Under Time Pressure with Limited Information, 161 Healthcare Provider Prejudice or Bias, 162 Patient Response: Mistrust and Refusal, 174 Conclusion, 175 5 INTERVENTIONS: SYSTEMIC STRATEGIES 180 Legal, Regulatory, and Policy Interventions, 181 Health Systems Interventions, 188 Patient Education and Empowerment, 196 6 INTERVENTIONS: CROSS-CULTURAL EDUCATION IN THE HEALTH PROFESSIONS 199 Background, 199 Cross-Cultural Communication: Links to Racial/Ethnic Disparities in Healthcare, 200 The Foundation and Emergence of Cross-Cultural Education, 201 Approaches to Cross-Cultural Education, 203 Summary, 212

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xv CONTENTS 7 DATA COLLECTION AND MONITORING 215 Obstacles to Racial/Ethnic Data Collection, 217 The Federal Role in Racial, Ethnic, and Primary Language Health Data, 219 Other Data Sources to Assess Healthcare Disparities, 223 Models of Measuring Disparities in Healthcare, 226 Data Needs and Recommendations, 232 8 NEEDED RESEARCH 235 Understanding Clinical Decision-Making and the Roles of Stereotyping, Uncertainty, and Bias, 236 Understanding Patient-Level Influences on Care, 237 Understanding the Influence of Healthcare Systems and Settings on Care for Minority Patients, 237 Understanding the Roles of Non-Physician Health Professions, 239 Assessing Healthcare Disparities Among Non-African American Minority Groups, 240 Assessing the Effectiveness of Intervention Strategies, 240 Developing Methods for Monitoring Healthcare Disparities, 241 Understanding the Contribution of Healthcare to Health Outcomes and the Health Gap Between Minority and Non-Minority Americans, 241 Mechanisms to Improve Research on Healthcare Disparities, 242 REFERENCES 244 APPENDIXES A Data Sources and Methods, 271 B Literature Review, 285 C Federal-Level and Other Initiatives to Address Racial and Ethnic Disparities in Healthcare, 384 D Racial Disparities in Healthcare: Highlights from Focus Group Findings, 392 E Committee and Staff Biographies, 406 PAPER CONTRIBUTIONS Racial and Ethnic Disparities in Diagnosis and Treatment: 417 A Review of the Evidence and a Consideration of Causes H. Jack Geiger Racial and Ethnic Disparities in Healthcare: A Background 455 and History W. Michael Byrd and Linda A. Clayton

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xvi CONTENTS The Rationing of Healthcare and Health Disparity for the 528 American Indians/Alaska Natives Jennie R. Joe Patient-Provider Communication: The Effect of Race and 552 Ethnicity on Process and Outcomes of Healthcare Lisa A. Cooper and Debra L. Roter The Culture of Medicine and Racial, Ethnic, and Class 594 Disparities in Healthcare Mary-Jo DelVecchio Good, Cara James, Byron J. Good, and Anne E. Becker The Civil Rights Dimension of Racial and Ethnic 626 Disparities in Health Status Thomas E. Perez Racial and Ethnic Disparities in Healthcare: Issues in the Design, Structure, and Administration of Federal Healthcare Financing Programs Supported 664 Through Direct Public Funding Sara Rosenbaum The Impact of Cost Containment Efforts on Racial and 699 Ethnic Disparities in Healthcare: A Conceptualization Thomas Rice Racial and Ethnic Disparities in Healthcare: 722 An Ethical Analysis of When and How They Matter Madison Powers and Ruth Faden INDEX 739