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Appendix C Workshop Agenda and Participant List WORKSHOP ON IMPROVING RACIAL AND ETHNIC DATA IN HEALTH December 12-13, 2002 Thursday, December 12, 2002 10:00 Welcome and Introductions Edward Perrin, University of Washington (Panel Chair) Andrew White, Committee on National Statistics lames Scanlon, Office of Science and Data Policy, Office of the Assistant Secretary for Planning and Evaluation, Department of Health and Human Services 10:15 The Importance of Collecting Data on Race, Ethnicity, and Socioeconomic Status Session Chair: Daniel Williams, University of Michigan (Panel Member) Authors: Nicole Lurie and Allen Fremont, RAND 1 0:45 Discussants: Olivia Carter-PoLras, University of Maryland Gem Daus, Asian and Pacific Islander American Health Forum 1 1:15 Open Discussion 42

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APPENDIX C 1 1:30 Legal Aspects of Race and Ethnicity Data Collection (Including Privacy Issues) Session Chair: William Kalsbeek, University of North Carolina, Chapel Hill (Panel Member) 1 1:30 Legal Framework: Mara You~lelman, National Health Law Program 12:00 Privacy Issues: Moya Gray, Director, Hawaii Office of Information Practices 12:30 Open Discussion 43 1:45 Race and Ethnicity Data Collection by Private Organizations Session Chair: L. Carl Volpe, WellPoint Health Networks Inc. (Panel Member) General Overview Collection of Data on Race/Ethnicity of Patients by Hospitals, Medical Groups, and Health Plans Author: David Nerenz, Michigan State University 2:15 The Collection of Race and Ethnicity Data by Health Plans Author: Carmella Bocchino, American Association of Health Plans 3:00 Discussants: Eileen Peterson, United Health Group Romana Hasnain-Wynia, Health Research and Education trust Andrew Webber, National Committee for Quality Assurance 4:00 Open Discussion Moderator: Edward Perrin, University of Washington (Panel Chair)

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44 Friday, December 13 8:30 IMPROVING RACIALAND ETHNIC DATA ON HEALTH Race and Ethnicity Data Collection by States Session Chair: Denise Love, National Association of Health Data Organizations (Panel Member) Authors: Sara Singer and Jeff Geppert, Stanford University; lay Bucchner, Rhode Island; Wu Xu, Utah; Walter Suarez, Minnesota; and Lorin Ranbom, Ohio 9:00 Discussants: Dan Friedman, Massachusetts Department of Public Health Carla E`lwartls, Florida Agency for Health Care Administration David Solet, Public Health, Seattle and King County 9:30 Open Discussion 10:00 Attendee Comments on Race and Ethnicity Data Collection Session Chair: Anthony D'Angelo, Computercraft (Panel Member) Workshop attendees were invited to sign up to give brief comments on the collection of racial and ethnic data 1 1:15 Perspectives of Data Users Session Chair: Jonathan Skinner, Dartmouth College (Panel Member) Panelists: Matthew Snipp, Stanford University Rhon~la BeLue, Metro Nashville Public Health Department Marian Gornick, Consultant, Health Services Research

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APPENDIX C WORKSHOP PARTICIPANTS LIST Presenters Edward Perrin (Panel Chair), University of Washington Rhonda BeLue, Metro Nashville Public Health Department lay Bucchner, Rhode Island Department of Health Carmella Bocchino, American Association of Health Plans Olivia Carter-Pokras, University of Maryland, Baltimore Campus Anthony D'Angelo, Computercraft Gem Daus, Asian and Pacific Islander American Health Forum Carla Denise Edwards, Florida Agency for Health Care Administration Allen Fremont, RAND Dan Friedman, Massachusetts Department of Public Health leffrey Geppert, Stanford University Marian Gornick, Health Services Research Moya Gray, Hawaii Office of Information Practices Romana Hasnain-Wynia, Health Research and Education Trust William Kalsbeek, University of North Carolina, Chapel Hill Denise Love, National Association of Health Data Organizations Nicole Lurie, RAND David Nerenz, Michigan State University Eileen Peterson, United Health Group Lorin Ranbom, Ohio Department of Health lames Scanlon, Office of Science and Data Policy, Department of Health and Human Services Jonathan Skinner, Department of Economics, Dartmouth College Matthew Snipp, Stanford University David Solet, Public Health, Seattle and King County Walter Suarez, Minnesota Department of Health L. Carl Volpe, Strategic Health Partnerships, WellPoint Health Networks Inc. Andrew Webber, National Committee for Quality Assurance Andrew White, Committee on National Statistics, National Academies David Williams, Department of Sociology, University of Michigan Mara Youdelman, National Health Law Program 45

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46 IMPROVING RACIALAND ETHNIC DATA ON HEALTH Invited Guests Steven Auerbach, Health Resources and Services Administration Roman Baez, Dental School Multicultural Programs lohn Burton, Council on African American Affairs, Inc. Audrey Burwell, Department of Health and Human Services Shari Campbell, Bureau of Primary Health Care Marcia Changkit, National Cancer Institute Kenneth Chu, Center for Reduce Cancer Health Disparities Beverly Coleman-Miller, M.D., Washington, DC Pam Curry, DHHS Office of Counter Terrorism and Pediatric Drug Development Charles Daly, Bureau of Primary Health Care Sheila Davis, Summit Health Institute for Research and Education Shirley Delaleu, Council on African American Affairs, Inc. Elaine Elinksy, Elinsky Consulting Roland Garcia, National Cancer Institute Kenneth Gerlach, Cancer Surveillance Branch Linda Greenberg, Centers for Medicare and Medicaid Services Robert Hahn, Centers for Disease Control and Prevention Ian Heffernan, National Institutes of Health Katherine Hollinger, Office of Women's Health, FDA Diane Hopkins, U.S. Department of Health and Human Services lin In, U.S. Department of Health and Human Services Debbie lackson, National Center for Health Statistics, CDC K.A. lagannathan, DHHS Administration for Children and Families Cheedy laja, Indiana University Center for Bioethics Yvonne Johns, DHHS Office of Minority Health Steve Jones II, United States Congress Evelyn Kappeler, DHHS Office of Population Affairs Onelio Lopez, U.S. Department of Health and Human Services lennifer Madans, Centers for Disease Control Diane Makuc, National Center for Health Statistics lennifer Malat, University of Cincinnati Mildred Martinez, Kaiser Permanente Donielle Newell, Council on African American Affairs, Inc. Ly Nguyen, Morgan State University Edna Paisano, DHHS Office of Public Health loAnn Pappalardo, DHHS Office of Public Health

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APPENDIX C Sharyn Parks, National Center for Injury Prevention and Control William Rodriguez, DHHS Office of Counter Terrorism and Pediatric Drug Development Beatrice Rouse, Substance Abuse Mental Health Services Administration Leonard Rubenstein, Physicians for Human Rights Theodore Small fir., Council on African American Affairs, Inc. Bryon Sogie-Thomas, National Medical Association Edward Sondik, Centers for Disease Control Irene Tsai, Kaiser Permanente Luz Vega, District of Columbia Department of Health Irene Zimmerman, Washington Association of Professional Anthropologists NRC Staff Daniel Melnick, Committee on National Statistics Michele Ver Ploog, Committee on National Statistics lamie Casey, Committee on National Statistics Tanya Lee, Committee on National Statistics Andrew White, Committee on National Statistics 47

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