ELIMINATING HEALTH DISPARITIES

MEASUREMENT AND DATA NEEDS

Panel on DHHS Collection of Race and Ethnicity Data

Michele Ver Ploeg and Edward Perrin, Editors

Committee on National Statistics

Division of Behavioral and Social Sciences and Education

NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
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Eliminating Health Disparities: Measurement and Data Needs ELIMINATING HEALTH DISPARITIES MEASUREMENT AND DATA NEEDS Panel on DHHS Collection of Race and Ethnicity Data Michele Ver Ploeg and Edward Perrin, Editors Committee on National Statistics Division of Behavioral and Social Sciences and Education NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington D.C. www.nap.edu

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Eliminating Health Disparities: Measurement and Data Needs 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/Grant No. HHS-100-01-0022 between the National Academy of Sciences and the U.S. Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. Library of Congress Cataloging-in-Publication Data Eliminating health disparities : measurement and data needs / Panel on DHHS Collection of Race and Ethnicity Data ; Michele Ver Ploeg and Edward Perrin, editors. p. ; cm. Includes bibliographical references. ISBN 0-309-09231-0 (pbk.) 1. Social medicine—United States—Methodology. 2. Health status indicators—United States—Measurement. 3. Social indicators—United States—Measurement. 4. Economic indicators—United States—Measurement. 5. Medical care—United States—Evaluation—Statistical methods. 6. Health services accessibility—United States—Evaluation—Statistical methods. 7. Minorities—Health and hygiene—United States—Statistical methods. 8. Ethnic groups—Health and hygiene—United States—Statistical methods. [DNLM: 1. Data Collection—United States. 2. Ethnic Groups—United States. 3. Evaluation Studies—United States. 4. Health Status Indicators—United States. 5. Socioeconomic Factors—United States. 6. Treatment Outcome—United States. WA 300 E424 2004] I. Ver Ploeg, Michele. II. Perrin, Edward. III. National Research Council (U.S.). Panel on DHHS Collection of Race and Ethnicity Data. RA418.3.U6E45 2004 362.1′0973—dc22 2004012734 Additional copies of this report are available from National Academies Press, 500 Fifth Street, NW, Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu Printed in the United States of America. Copyright 2004 by the National Academy of Sciences. All rights reserved. Suggested citation: National Research Council. (2004). Eliminating Health Disparities: Measurement and Data Needs. Panel on DHHS Collection of Race and Ethnicity Data, Michele Ver Ploeg and Edward Perrin, Editors. Committee on National Statistics, Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

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Eliminating Health Disparities: Measurement and Data Needs THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine 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. 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 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. 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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Eliminating Health Disparities: Measurement and Data Needs PANEL ON DHHS COLLECTION OF RACE AND ETHNICITY DATA EDWARD PERRIN (Chair), Department of Health Services, University of Washington HECTOR BALCAZAR, School of Public Health, University of North Texas ANTHONY D’ANGELO, Statistical Consultant, Temecula, CA JOSE ESCARCE, Scientist, University of California, Los Angeles WILLIAM KALSBEEK, Department of Biostatistics, University of North Carolina, Chapel Hill GEORGE KAPLAN, Department of Epidemiology, University of Michigan DENISE LOVE, National Association of Health Data Organizations, Salt Lake City, UT JOHN LUMPKIN, Robert Wood Johnson Foundation, Princeton, NJ ALVIN ONAKA, Department of Health, Health Status Monitoring and State Registrar of Vital Statistics, Honolulu, HI NEIL POWE, Welch Center for Prevention Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, Baltimore JONATHAN SKINNER, Department of Economics, Dartmouth College L. CARL VOLPE, Strategic Health Partnerships, WellPoint Health Networks, Inc., Thousand Oaks, CA DAVID WILLIAMS, Department of Sociology, University of Michigan ALAN ZASLAVSKY, Department of Health Care Policy, Harvard Medical School MICHELE VER PLOEG, Study Director JAMIE CASEY, Research Assistant TANYA M. LEE, Project Assistant MARY GRACE KOVAR, Consultant DANIEL MELNICK, Consultant

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Eliminating Health Disparities: Measurement and Data Needs COMMITTEE ON NATIONAL STATISTICS 2003-2004 JOHN E. ROLPH (Chair), Marshall School of Business, University of Southern California JOSEPH G. ALTONJI, Institute for Policy Research and Department of Economics, Northwestern University ROBERT BELL, AT&T Research Laboratories, Florham Park, NJ LAWRENCE D. BROWN, Department of Statistics, The Wharton School, University of Pennsylvania ROBERT M. GROVES, Survey Research Center, University of Michigan JOHN HALTIWANGER, Department of Economics, University of Maryland PAUL HOLLAND, Educational Testing Service, Princeton, NJ JOEL L. HOROWITZ, Department of Economics, Northwestern University WILLIAM KALSBEEK, Survey Research Unit, Department of Biostatistics, University of North Carolina, Chapel Hill ARLEEN LEIBOWITZ, School of Public Policy and Social Research, University of California, Los Angeles VIJAYAN NAIR, Department of Statistics, Department of Industrial and Operations Engineering, University of Michigan DARYL PREGIBON, Google, New York, NY KENNETH PREWITT, Russell Sage Foundation, New York, NY NORA CATE SCHAEFFER, Department of Sociology, University of Wisconsin, Madison CONSTANCE F. CITRO, Director

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Eliminating Health Disparities: Measurement and Data Needs Acknowledgments I would like to thank, on behalf of the Panel on DHHS Collection of Race and Ethnicity Data, all of the individuals involved in the production of this report. I first would like to thank our sponsors within DHHS, the Office of the Assistant Secretary for Planning and Evaluation, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the HIV/ AIDS Contigency Fund, the National Institutes of Health, the Office for Civil Rights, and the Office of Minority Health. We would like to especially thank James Scanlon and Dale Hitchcock of the Office of the Assistant Secretary for Planning and Evaluation (ASPE) for their continual assistance as liaisons for the panel to DHHS. We would also like to thank the staff of the Centers for Medicaid and Medicare Service and of the Social Security Administration who met with National Research Council’s Committee on National Statistics (CNSTAT) staff regarding racial and ethnic data collection for these agencies’ programs. Many individuals gave presentations to the panel on various data related topics and should be thanked for taking time out of their busy schedules. Vickie Mays of the University of California Los Angeles briefed the panel on the data activities of the National Committee on Vital and Health Statistics, Subcommittee on Special Populations. William Braithwaite, of PriceWaterhouseCoopers, provided information on the data collection requirements of the Health Insurance Portability and Accountability Act. The panel is also indebted to those individuals who wrote background papers for this report and for the panel’s Workshop on Improving Racial and

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Eliminating Health Disparities: Measurement and Data Needs Ethnic Data in Health. Gratefully we thank Patricia O’Campo, Jessica Burke, Allen Fremont, Nicole Lurie, Jeffrey Geppert, Sara Singer, Jay Buechner, Lorin Ranbom, Walter Suarez, Wu Xu, David Nerenz, Connie Currier, and Carmella Bocchino. The papers written by these individuals appear in the Appendixes to this report. The panel is grateful for the excellent work of the staff of CNSTAT and the National Research Council for developing and organizing the workshop and for writing this report. Michele Ver Ploeg, study director for the panel and coeditor of the report, should be thanked for steering the panel throughout its activities. She drafted major sections of the report and guided the report through the review process. The panel would like thank to Jamie Casey, research assistant, for providing excellent service to the panel—diligently assembling background materials and tables and figures for the report. The panel is also thankful for the efforts of Tanya Lee, project assistant, in handling all administrative matters regarding the panel and in the production of this report. Earl Pollack, program officer, read through early drafts and made valuable contributions to the editing and polishing of the report. The panel was also ably aided by the services of two consultants. Mary Grace Kovar met with several Department of Health and Human Services staff members regarding the details of their data systems, and Daniel Melnick drafted the summary of the Workshop on Improving Racial and Ethnic Data in Health (released in 2003) and commented on early drafts of the panel’s final report. Kirsten Sampson Snyder and Chris McShane of the reports office of the Division of Behavioral and Social Science Education, and Cameron Fletcher, are thanked for guiding the workshop report through the review process and for professional editing of the report. As chair of this panel, I thank my fellow panel members for giving their time and expertise so generously toward the completion of this report. Each of their contributions to the discussions in the development and to the drafting of this report is greatly appreciated. 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 Report Review Committee of the National Research Council. 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 thank the following individuals for their review of this report: Olivia Carter-Pokras, Department of Epidemiology and Preventive Medicine, University of Maryland School of Medicine; Sheldon Greenfield, Department of Medicine, University of Califor-

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Eliminating Health Disparities: Measurement and Data Needs nia, Irvine; Judith R. Lave, Department of Health Policy and Management, Graduate School of Public Health, University of Pittsburgh; Vickie M. Mays, Department of Clinical Psychology, University of California, Los Angeles; Dorothy P. Rice, Department of Social and Behavioral Sciences Emeritus, School of Nursing, University of California, San Francisco; Robert Santos, Executive Office, NuStats, Austin, TX; Kenneth E. Thorpe, Department of Health Policy and Management, Rollins School of Public Health, Emory University; and Clyde Tucker, Office of Survey Methods Research, Bureau of Labor Standards, Washington, DC. 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 Richard A. Kulka, Social and Statistical Sciences, Research Triangle Institute. Appointed by the National Research Council, he 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 authoring committee and the institution. Edward Perrin, Chair Panel on DHHS Collection of Race and Ethnicity Data

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Eliminating Health Disparities: Measurement and Data Needs Contents     EXECUTIVE SUMMARY   1      The Importance of Data on Race, Ethnicity, Socioeconomic Position, and Acculturation and Language Use,   3      DHHS Data Collection Systems,   5      State Data Collection Systems,   9      Private-Sector Data Collection Systems,   10 1   INTRODUCTION   14      Data to Support Health Disparities Interventions and Research,   16      Panel Charge,   17      Previous Reviews of Data Needs,   18      The Report,   19 2   THE IMPORTANCE OF DATA ON RACE, ETHNICITY, SOCIOECONOMIC POSITION, AND ACCULTURATION IN UNDERSTANDING DISPARITIES IN HEALTH AND HEALTH CARE   21      Disparities in Health and Health Care,   22      Four Key Dimensions of Disparities,   31      The Importance of Understanding Disparities in Health and Health Care,   37

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Eliminating Health Disparities: Measurement and Data Needs 3   MEASURING RACE, ETHNICITY, SOCIOECONOMIC POSITION, AND ACCULTURATION   41      Race and Ethnicity,   41      Socioeconomic Position,   45      Acculturation and Language Use,   52      Cross-Cutting Issues in Measurement and Use of These Data,   55 4   DHHS COLLECTION OF DATA ON RACE, ETHNICITY, SOCIOECONOMIC POSITION, AND ACCULTURATION AND LANGUAGE USE   62      Household and Individual Survey Data Collections,   63      Provider-Based Surveys,   67      Medicare Data,   68      Disease Surveillance System Data Collection,   72      Human Services Programs,   73      Indian Health Service Data,   74      Recommendations,   75 5   STATE-BASED COLLECTION OF DATA ON RACE, ETHNICITY, SOCIOECONOMIC POSITION, AND ACCULTURATION AND LANGUAGE USE   83      Vital Statistics Birth and Death Records,   85      Hospital Discharge Abstracts,   88      Cancer Registries,   89      State Health Interview Surveys,   90      Medicaid and SCHIP Data,   91      Recommendations,   93 6   PRIVATE-SECTOR COLLECTION OF DATA ON RACE, ETHNICITY, SOCIOECONOMIC POSITION, AND ACCULTURATION AND LANGUAGE USE   99      Private-Sector Data Collection Systems,   100      Legal Framework,   102      Current Practices,   105      Recommendations,   112     REFERENCES   118

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Eliminating Health Disparities: Measurement and Data Needs     APPENDIXES     A   Descriptions of National Health and Health Care Surveys   129      National Household Surveys on Health-Related Topics,   129      Health Care Establishment-Based Survey Data Collections,   144      CDC Surveillance Data Systems,   149      Human Service Programs in DHHS,   173 B   Workshop on Improving Racial and Ethnic Data in Health   179 C   Recommendations on the Use of Socioeconomic Position Indicators to Better Understand Racial Inequalities in Health Patricia O’Campo and Jessica Burke   184 D   The Role of Racial and Ethnic Data Collection in Eliminating Disparities in Health Care Allen Fremont and Nicole Lurie   202 E   State Collection of Racial and Ethnic Data Jeffrey J. Geppert, Sara J. Singer, Jay Buechner, Lorin Ranbom, Walter Suarez, and Wu Xu   232 F   Collection of Data on Race and Ethnicity by Private-Sector Organizations: Hospitals, Health Plans, and Medical Groups David Nerenz and Connie Currier   249 G   Racial and Ethnic Data Collection by Health Plans Carmella Bocchino   272 H   Biographical Sketches   288

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