Appendix B
Workshop on Improving Racial and Ethnic Data in Health

AGENDA

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

James 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: David Williams, University of Michigan (Panel Member)

Authors: Nicole Lurie and Allen Fremont, RAND

10:45

Discussants:

Olivia Carter-Pokras, University of Maryland

Gem Daus, Asian and Pacific Islander American Health Forum

11:15

Open Discussion



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Eliminating Health Disparities: Measurement and Data Needs Appendix B Workshop on Improving Racial and Ethnic Data in Health AGENDA 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 James 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: David Williams, University of Michigan (Panel Member) Authors: Nicole Lurie and Allen Fremont, RAND 10:45 Discussants: Olivia Carter-Pokras, University of Maryland Gem Daus, Asian and Pacific Islander American Health Forum 11:15 Open Discussion

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Eliminating Health Disparities: Measurement and Data Needs 11:30 Legal Aspects of Race and Ethnicity Data Collection (Including Privacy Issues) Session Chair: William Kalsbeek, University of North Carolina, Chapel Hill (Panel Member) 11:30 Legal Framework: Mara Youdelman, National Health Law Program 12:00 Privacy Issues: Moya Gray, Director, Hawaii Office of Information Practices 12:30 Open Discussion 1:45 Race and Ethnicity Data Collection by Private Organizations Session Chair: L. Carl Volpe, WellPoint Health Networks Inc. (Panel Member) 1:45 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) Friday, December 13 8:30 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; Jay Buechner, Rhode Island; Wu Xu, Utah; Walter Suarez, Minnesota; and Lorin Ranbom, Ohio 9:00 Discussants: Dan Friedman, Massachusetts Department of Public Health Carla Edwards, Florida Agency for Health Care Administration David Solet, Public Health, Seattle and King County

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Eliminating Health Disparities: Measurement and Data Needs 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 11:15 Perspectives of Data Users Session Chair: Jonathan Skinner, Dartmouth College (Panel Member) Panelists: Matthew Snipp, Stanford University Rhonda BeLue, Metro Nashville Public Health Department Marian Gornick, Consultant, Health Services Research WORKSHOP PARTICIPANTS LIST Presenters Edward Perrin (Panel Chair), University of Washington Rhonda BeLue, Metro Nashville Public Health Department Carmella Bocchino, American Association of Health Plans Jay Buechner, Rhode Island Department of Health 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 Jeffrey 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 James Scanlon, Office of Science and Data Policy, Department of Health and Human Services Sara Singer, Stanford University Jonathan Skinner, Department of Economics, Dartmouth College

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Eliminating Health Disparities: Measurement and Data Needs Matthew Snipp, Stanford University David Solet, Public Health, Seattle and King County Walter Suarez, Minnesota Department of Health L. Carl Volpe, Strategic Health Partnership, 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 Wu Xu, Utah, Department of Health Mara Youdelman, National Health Law Program Invited Guests Steven Auerbach, Health Resources and Services Administration Roman Baez, Dental School Multicultural Programs John 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 Colman-Miller, Pam Curry, DHHS Office of Counter Terrorism and Pediatric Drug Development Charles Daly, Bureau of Primary Health Care Shelia 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 Jan Heffernan, National Institutes of Health Katherine Hollinger, Office of Women’s Health, FDA Diane Hopkins, U.S. Department of Health and Human Services Jin In, U.S. Department of Health and Human Services Debbie Jackson, National Center for Health Statistics, CDC K.A. Jagannathan, DHHS Administration for Children and Families Cheedy Jaja, 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

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Eliminating Health Disparities: Measurement and Data Needs Jennifer Madans, Centers for Disease Control Diane Makuc, National Center for Health Statistics Jennifer 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 JoAnn Pappalardo, DHHS Office of Public Health 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 Theodore Small Jr., 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 Michele Ver Ploeg, Committee on National Statistics Jamie Casey, Committee on National Statistics Tanya Lee, Committee on National Statistics Andrew White, Committee on National Statistics