implemented the DHHS Policy for Improving Race and Ethnicity Data, or the “Inclusion Policy,” which requires the inclusion of information on race and ethnicity in all DHHS-funded and -sponsored data collection systems. Also in 1999, the DHHS Data Council and the Data Work Group of the DHHS Initiative to Eliminate Racial and Ethnic Disparities in Health produced a report called Improving the Collection and Use of Racial and Ethnic Data in Health and Human Services (U.S. DHHS, 1999). This report contained recommendations for DHHS to improve the collection, analysis and interpretation, dissemination and use, research and maintenance of racial and ethnic data. Previous reports produced by DHHS or their contractors have also addressed the topic of data collection for measuring racial and ethnic disparities (Waksberg, Levine, and Marker, 2000; U.S. Public Health Service, 1992, 1993; U.S. DHHS, 1985). The National Committee on Vital and Health Statistics, an advisory committee to DHHS, has devoted serious attention to the collection of data on race and ethnicity within DHHS by holding hearings around the nation, writing reports, and making recommendations that encourage the collection of such data.
The panel considered these DHHS reports during its information-gathering phase and also invited experts on various data-related topics—including the Health Insurance Portability and Accountability Act (HIPAA) and the National Disparities Report Card—as well as members of the National Committee on Vital and Health Statistics Subgroup on Populations to brief the panel in open meetings. The panel also sponsored a 2-day Workshop on Improving Racial and Ethnic Data in Health, which focused on state-based and private sector-based data collections and resulted in a summary report (NRC, 2003). The agenda for this workshop is included in Appendix B. The panel commissioned a paper for this report to review the collection of socioeconomic position measures in health and health care databases. This paper, Recommendations on the Use of Socioeconomic Position Indicators to Better Understand Racial Inequalities in Health (O'Campo and Burke), is included in Appendix C. Four papers also were commissioned for the workshop: The Role of Racial and Ethnic Data Collection in Eliminating Disparities in Health Care (Fremont and Lurie); State Collection of Racial and Ethnic Data (Geppert, Singer, Buechner, Ranbom, Suarez, and Xu); Collection of Data on Race and Ethnicity by Private-Sector Organizations: Hospitals, Health Plans, and Medical Groups (Nerenz and Currier); and Racial and Ethnic Data Collection by Health Plans (Bocchino). These papers are included in Appendixes D-G of this report.
The rest of this report contains the panel’s assessment of the strengths and weaknesses of racial and ethnic data collection efforts in the health and