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A Data Sources and Methods In an effort to provide a comprehensive response to the study charge, the study committee examined various sources of data to assess the scope of disparities in healthcare, explore sources of these disparities, and gen- erate strategies to eliminate them. These data sources included a review of recent scientific literature, commissioned papers, public input from pro- fessional societies and organizations, input from technical liaison panels, and focus group/roundtable input. The committee received these data over the course of the 17-month study period. The study timeline is de- picted in Figure A-1. Study Committee A 15-member study committee was convened to assess these data. Membership of the committee included individuals with expertise in clini- cal medicine, economics, healthcare services research, health policy, health professions education, minority health, psychology, anthropology and related fields. The committee was convened for five two-day meetings held in December 2000, February 2001, May 2001, July 2001, and Septem- ber 2001. Literature Review The literature review included, but was not limited to, seminal ar- ticles published in peer-reviewed journals within the last ten years, with an emphasis on the most recent publications. In selecting literature to re- 271
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272 FIGURE A-1 Study components and timeline. UNEQUAL TREATMENT
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273 A: DATA SOURCES AND METHODS view, the committee identified only peer-reviewed studies that assessed racial and ethnic variation in healthcare while controlling for differences in access to healthcare (either by studying similarly insured patients or by statistically adjusting for differences in insurance status) and socioeco- nomic differences. This body of literature, however, represents only a frac- tion of the published studies that investigate racial and ethnic differences in access to and use of healthcare services. Commissioned Papers The study committee commissioned seven papers. These papers were intended to provide in-depth information on selected topic areas (e.g., legal aspects of healthcare discrimination, studies on patient-provider in- teraction, extensive literature review). Topics and paper authors were de- termined by the study committee. It should be noted that the commis- sioned paper contributions do not serve to substitute for the committee’s own review and analysis of the literature, as described above and in Chap- ter 1. Much of the committee’s own analysis was conducted indepen- dently, prior to receiving the draft commissioned papers. Public Workshops The study committee hosted four workshops to gain additional infor- mation from the public on aspects of the study charge. These workshops occurred during open portions of the committee’s scheduled meetings. The topics and nature of the workshops were determined by the study committee. They were intended to allow the committee to gain additional perspectives on potential sources of bias in clinical settings; institutional or system-based obstacles that may differentially affect service provision to racial and ethnic minority patients; other potential sources of health- care disparities; and explore potential interventions to eliminate dispari- ties in health service delivery. Content included the perspectives of racial and ethnic minority and non-minority health professions organizations (e.g., American Medical Association), and government agencies, as well as programs and strategies employed by organizations to address dis- parities. In addition, at the fourth workshop selected commissioned pa- pers served as topic areas for a discussion of legal and ethical perspec- tives. At each public workshop meeting, individuals and groups were invited to present information to the study committee in a roundtable setting to facilitate discussion and interaction. Agendas from public work- shops and lists of participants are listed in Boxes A-1 through A-4.
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274 UNEQUAL TREATMENT BOX A-1 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE NATIONAL ACADEMY OF SCIENCES, 2101 CONSTITUTION AVENUE, NW ROOM 150 AGENDA TUESDAY, DECEMBER 19, 2000 1:00 p.m. WELCOME AND INTRODUCTIONS Alan Nelson, M.D. Chair IOM Committee on Understanding and Eliminating Racial and Ethnic Disparities in Healthcare 1:15 p.m. OVERVIEW FROM STUDY SPONSOR Nathan Stinson Ph.D., M.D., M.P.H. Deputy Assistant Secretary for Minority Health, U.S. Department of Health and Human Services 1:35 p.m. CONGRESSIONAL PERSPECTIVE Charles Dujon Legislative Assistant, Office of the Honorable Jessie Jack- son, Jr. U.S. House of Representatives 2:00 p.m. PRESENTATIONS FROM OTHER INTEREST GROUPS AND STAKEHOLDERS 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., & Beverly Little Thunder, R.N. Indian Health Board 3:00 p.m. UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE — WHAT IS KNOWN AND WHAT NEEDS TO BE KNOWN? H. Jack Geiger, M.D. City University of New York 4:00 p.m. ADJOURN
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275 A: DATA SOURCES AND METHODS BOX A-2 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE NATIONAL ACADEMY OF SCIENCES CECIL AND IDA GREEN BUILDING, 2001 WISCONSIN AVENUE, NW ROOM 126 AGENDA TUESDAY, FEBRUARY 20, 2001 9:00 a.m. WELCOME AND INTRODUCTIONS Alan Nelson, M.D. Chair IOM Committee on Understanding and Eliminating Racial and Ethnic Disparities in Healthcare Deborah Danoff, M.D. 9:15 a.m. Assistant Vice President, Division of Medical Education American Association of Medical Colleges Paul M. Schyve, M.D. 9:45 a.m. Senior Vice President Joint Commission on Accreditation of Healthcare Organizations Sindhu Srinivas, M.D. 10:15 p.m. President American Medical Student Association Mary E. Foley, R.N., M.S. 10:45 a.m. President American Nurses Association Randolph D. Smoak, Jr., M.D. 11:15 a.m. President American Medical Association Terri Dickerson 11:45 a.m. Assistant Staff Director U.S. Commission on Civil Rights 12:15 p.m. PUBLIC WORKSHOP ADJOURNS
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276 UNEQUAL TREATMENT BOX A-3 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE NATIONAL ACADEMY OF SCIENCES CECIL AND IDA GREEN BUILDING, 2001 WISCONSIN AVENUE, NW ROOM 126 AGENDA TUESDAY, MAY 15, 2001 Carolyn Clancy, M.D. 1:00 p.m. Agency for Healthcare Research and Quality James Youker, M.D. 1:45 p.m. President, American Board of Medical Specialties Ray Werntz 2:15 p.m. Consumer Health Education Council Vickie Mays, Ph.D., Chair 2:45 p.m. National Committee on Vital and Health Statistics Subcommittee on Populations 3:15 p.m. QUESTIONS AND COMMENTS 3:30 p.m. PUBLIC WORKSHOP ADJOURNS WEDNESDAY, MAY 16, 2001 Robyn Nishimi, Ph.D. 9:00 a.m. Chief Operating Officer, National Quality Forum Lovell Jones, Ph.D. 9:30 a.m. Intercultural Cancer Council 10:00 a.m. PUBLIC WORKSHOP ADJOURNS
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277 A: DATA SOURCES AND METHODS BOX A-4 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE NATIONAL ACADEMY OF SCIENCES, 2101 CONSTITUTION AVENUE, NW MAIN BUILDING—LECTURE ROOM PUBLIC WORKSHOP “RACE, THE MEDICAL MARKETPLACE, AND HEALTHCARE DISPARITIES” AGENDA THURSDAY, SEPTEMBER 6, 2001 8:30 a.m. WELCOME AND INTRODUCTIONS Alan Nelson, M.D. Chair, IOM Committee on Understanding and Eliminating Racial and Ethnic Disparities in Healthcare 8:35 a.m. OPENING REMARKS David Satcher, M.D., Ph.D. U.S. Surgeon General 8:55 a.m. PANEL DISCUSSION M. Gregg Bloche, J.D., M.D. Moderator, IOM Committee on Understanding and Eliminating Racial and Ethnic Disparities in Healthcare PARTICIPANTS: 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 Government, 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 Thomas Rice, Ph.D. Professor and Vice-Chair, Department of Health Services, UCLA School of Public Health 11:00 a.m. ADJOURN
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278 UNEQUAL TREATMENT Technical Liaison Panels Four liaison panels were assembled to serve as a resource to the com- mittee, to provide advice and guidance in identifying key information sources, to provide recommendations to the study committee regarding in- tervention strategies, and to ensure that relevant consumer and professional perspectives were represented. Liaison panels were composed of individu- als with relevant experience or expertise on the study charge. Nominations for individuals invited to the panels were sought from over 100 stakeholder groups. Panel members included patient advocates, providers of health- care services, payer groups, as well as representatives from ethnic minority professional organizations and federal agencies. Each liaison panel was con- vened by study staff in Washington, D.C. for a half-day meeting. Panelists were asked to provide recommendations regarding potential sources of data, intervention strategies, and other recommendations relevant to the study charge. Discussion content and recommendations from the liaison panels were presented by staff to the study committee at its meetings. The agenda for panel meetings is presented in Box A-5. Lists of participants for each of the four panels are presented in Boxes A-6 through A-9. Focus Groups and Roundtable Discussions A series of focus groups were conducted by the Westat Corporation, Rockville, MD, for the study committee (see Appendix E). Information gathered at focus group discussions was intended to afford the study com- mittee greater insight into the experiences and perceptions of patients and providers, supplementing data from the empirical literature, and provid- ing a richer context for data interpretation. Qualitative data gathered during focus group discussions were used to illustrate and expand upon findings and recommendations provided in the committee report. Six groups, composed of 8-10 individuals each, were conduced with healthcare consumers with participants from various racial and ethnic backgrounds. Two groups were conducted with African Americans: one in Los Angeles, CA, and the other in Rockville, MD. The third group was conducted in Los Angeles with Hispanics who were fluent in English, and the fourth was conducted in Washington, DC, with Hispanics who identi- fied themselves as primary Spanish-speaking with little or no English flu- ency. The fifth group was conducted with American Indians in Albuquer- que, New Mexico. The final group was conducted in Los Angeles with Chinese Americans who identified themselves as primarily Mandarin- speaking with little or no English fluency. Participants were asked to comment on the quality of healthcare they received and experiences en- countered when seeking medical care in a variety of public and private
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279 A: DATA SOURCES AND METHODS BOX A-5 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE AGENDA—LIAISON PANEL 12:00 p.m. LUNCH 12:15 p.m. INTRODUCTIONS Daniel J. Wooten, M.D. IOM Scholar in Residence Panel Chair 12:30 p.m. OVERVIEW OF IOM STUDY Brian Smedley, Ph.D. Adrienne Stith, Ph.D. IOM study staff 12:45 p.m. CURRENT INITIATIVES AND RESOURCES FOCUSED ON REDUCING HEALTHCARE DISPARITIES 1:30 p.m. BREAK 1:45 p.m. DISCUSSION OF FACTORS THAT CONTRIBUTE TO INEQUITIES IN HEALTHCARE 2:30 p.m. PANEL INPUT—RECOMMENDATIONS TO STUDY COMMITTEE • Recommendations for Intervention Strategies • Policy Recommendations • Research Recommendations 4:00 p.m. ADJOURN
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280 UNEQUAL TREATMENT BOX A-6 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE TECHNICAL LIAISON FEDERAL PANEL FEBRUARY 12, 2001 Jonca Bull, M.D., Food and Drug Administration Denice Cora-Bramble, M.D., Health Resources and Services Administration Marsha Davenport, M.D., Center for Medicare and Medicaid Services Carole Brown, Office for Civil Rights, Office of the Secretary of Health and Human Services LTC Willie L. Hensley, Department of Veterans Affairs *Joan Jacobs, Office of Minority Health, Office of the Secretary of Health and Human Services Camara Phyllis Jones, M.D., M.P.H., Ph.D., Centers for Disease Control and Prevention Raynard Kington, M.D., Ph.D., National Institutes of Health Yvonne T. Maddox, Ph.D., National Institutes of Health Beverly Malone, Ph.D., Office of Public Health and Science, Office of the Secretary of Health and Human Services George A. Mensah, M.D., Centers for Disease Control and Prevention Leo J. Nolan III, Indian Health Service Delores L. Parron, M.D., Planning and Evaluation Program, Department of Health and Human Services Capt. Adam M. Robinson, Jr., M.D., Department of Defense Craig Vanderwagen, M.D., Indian Health Service *observer from sponsoring office
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281 A: DATA SOURCES AND METHODS BOX A-7 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE TECHNICAL LIAISON PANEL FEBRUARY 14, 2001 Joseph A. Berry, M.D., United Healthcare Zora Brown, Breast Cancer Resource Committee Gina Gregory-Burns, M.D., Kaiser Permanente Mary Lou de Leon Siantz, R.N., Ph.D., National Association of Hispanic Nurses Gary C. Dennis, M.D., Howard University Hospital Richard Levinson, M.D., DPA, American Public Health Association Joseph Quash, M.D., Association of Black Cardiologists Rene F Rodriguez, M.D., Interamerican College of Physicians and Surgeons Cynthia A. Warrick, Ph.D., Howard University Donald A. Young, M.D., Health Insurance Association of America
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282 UNEQUAL TREATMENT BOX A-8 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE LIAISON PANEL MAY 4, 2001 David Baines, M.D., Seattle Indian Health Board Henry Chung, M.D., Pfizer Pharmaceuticals Groups Tom Chung, Ph.D., Commonwealth of Massachusetts, Executive Office of Elder Affairs Carolyn M. Clancy, M.D., Agency for Health Research & Quality Gem P. Daus, M.A., Asian and Pacific Islander American Health Forum Lucille Davis, Ph.D., R.N., Southern University School of Nursing, Baton Rouge, LA Pete Duarte, M.D., Thomason Hospital, El Paso, TX Alicia C. Georges, Ed.D., Department of Nursing, Herbert H. Lehman College, Bronx, NY Robert D. Gibson, Pharm.D., Sc.D., American Pharmaceutical Association Miya Iwataki, Los Angeles County Department of Health Services Anita Moncrease, M.D., M.P.H., Health Resources and Service Administration Tom Perez, J.D., Maryland University School of Law Elena Rios, M.D., M.S.P.H., National Hispanic Medical Association Richard Allen Williams, M.D., University of California at Los Angeles and Minority Health Institute *Violet Ryo-Hwa Woo, M.S., M.P.H., Office of Minority Health * observer from sponsoring office
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283 A: DATA SOURCES AND METHODS BOX A-9 INSTITUTE OF MEDICINE COMMITTEE ON UNDERSTANDING AND ELIMINATING RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE LIAISON PANEL JUNE 21, 2001 Dennis Andrulis, Ph.D., M.P.H., State University of New York Downstate Medical Center Deborah Bohr, M.P.H., Health Research and Educational Trust Cindy Brach, M.P.P., Agency for Healthcare Research and Quality Deborah Danoff, M.D., Association of American Medical Colleges Leonard G. Epstein., M.S.W., Bureau of Primary Health Care, Health Resources Services Administration George Flouty, M.D., Pfizer, Inc. Candice Mathew Healy, M.P.A., State University of New York Downstate Medical Center Laura Hernandez, M.P.I.A., Centers for Medicare and Medicaid Services (formerly the Health Care Financing Administration) Charlene Landis, M.A., Pfizer, Inc. Ed Martinez, M.S., National Association of Public Hospitals *Guadalupe Pacheco, M.S.W., Office of Minority Health, DHHS Rea Panares, M.H.S., Washington Business Group on Health Carlos Vidal, Ph.D., State University of New York Stonybrook Malcom Williams, M.P.P., Grantmakers in Health VIDEO CONFERENCE PARTICIPANTS Niels Agger-Gupta, Ph.D., California Healthcare Interpreters Association Sakinah Carter, M.P.H., The California Endowment Tessie Guillermo, Asian and Pacifica Islander Health Forum Melba Hinojosa, M.A., RN, MediCal Managed Care, California Department of Health Services Vivian Huang, California Primary Care Association Wendy Jameson, M.P.P., M.P.H., California Health Care Safety Net Institute Beatriz Solis, M.P.H., LA Care Health Plan Jai Lee Wong, The California Endowment * observer from sponsoring office
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284 UNEQUAL TREATMENT settings, either for themselves or for a child or other family member. All participants had private health insurance, Medicare, Medicaid/MediCal, or Indian Health Service coverage. In addition, two focus groups were conducted by telephone with Af- rican American and Hispanic healthcare providers throughout the United States: one was conducted with nurses, the other with physicians. Partici- pants were asked to provide their opinions and comments on the quality of healthcare services that minority patients receive. They also discussed how their race or ethnicity affected their medical training or professional careers. Providers’ perspectives added a rich content for understanding patients’ experiences with racism in healthcare, addressing some of the institutional factors that affect quality of care. An experienced facilitator, who possessed knowledge of cultural and linguistic differences of ethnic minority groups, led each of the nine groups. Facilitators for the consumer groups were matched with regard to race, ethnicity, and primary language. Study staff were present at Washington, DC area and phone-based focus groups. To supplement qualitative information on the experiences and per- ceptions of racial and ethnic minority patients, advocates, and their health- care providers, roundtable discussions were held at two national confer- ences (the Asian American and Pacific Islander Health Forum [AAPIHF] conference in Alameda, CA and the Indian Health Service [IHS] Research conference in Albuquerque, NM) where racial and ethnic minority health issues were discussed. At both conferences, study staff solicited partici- pants from among conference attendees and invited them to participate in small group discussions (up to 20 people) to discuss participants’ percep- tions of racial and ethnic healthcare disparities and strategies to eliminate them. At the Indian Health Service Research Conference, a member of the study committee (Dr. Jennie Joe) facilitated a small group discussion that including American Indian tribal leaders, healthcare providers, and IHS staff. At the AAPIHF conference, study staff facilitated three small dis- cussion groups, including representatives of advocacy and community groups, healthcare providers, and others.