September 26, 2003
The Honorable Tommy G. Thompson
Department of Health and Human Services
200 Independence Avenue, SW
Washington, D.C. 20201
Dear Secretary Thompson:
The National Committee on Vital and Health Statistics (NCVHS) commends your initiatives to eliminate racial and ethnic disparities in health care. Disparities in access to and delivery of health care to racial and ethnic minorities are well documented by the research community as well as by federal agencies. The need for the collection of adequate and comparable data for racial and ethnic populations is also well documented. Your initiatives confirm the need to collect information of the race and ethnicity of individuals in order to manage, monitor and evaluate programs to prevent disease and promote better health outcomes.
One of the nation’s important health goals is to eliminate racial and ethnic disparities in our health care system to ensure that all Americans receive quality health care. We commend HHS for taking the lead in promoting the collection of racial and ethnic data in the private sector, such as the issuance of the Food and Drug Administration (FDA) Guidance for Industry on the Collection of Race and Ethnicity Data in Clinical Trials for FDA Regulated Products. This is an important step toward obtaining accurate health-related data.
Without the collection of standardized racial and ethnic data in health plans, progress toward achieving the national goal of eliminating racial and ethnic disparities cannot be monitored. Medical service provider administrative data are a critical source of information on the race and ethnicity of individuals. However, a uniform data collection infrastructure does not exist. Thus, health plans use a variety of strategies to collect data on race and ethnicity (e.g., administrative data, electronic medical records, enrollee surveys, federal and state enrollment files for Medicare and Medicaid beneficiaries, and data linkages). Most of these efforts have been limited to members representing small subsets of assorted health plans (e.g., new enrollees, patients with particular health conditions, or a random sample of enrollees). Through testimony gathered from public and private sector health plans, large employers and business coalitions, quality oversight organizations, measurement experts, state and federal health data agencies and other interested stakeholders, the NCVHS Quality Workgroup has also identified significant data gaps.
The NCVHS recommends that HHS strongly encourage and provide support as outlined below to public and private sector health plans to collect accurate and complete racial and ethnic data in accordance with the revised Office of Management and Budget (OMB) standard categories. To accomplish this, HHS should:
- Promote racial, ethnic, and primary language data collection and reporting by public and private health plans and provide information and expertise to assist in the accomplishment of this goal.
- Inform insurers, health plans, employers, providers, entities, and the general public that data collection and reporting by race, ethnicity, and primary language are legal and often required by law.
- Raise awareness that data collection is needed to achieve Healthy People 2010 goals, and to comply with Title VI nondiscrimination requirements.
- Support research on the best practices for collection and reporting of data by race, ethnicity, and primary language.
- Facilitate the collection of racial and ethnic data using the OMB’s revised standard categories and the collection of primary language in appropriate administrative transactions mandated under HIPAA.
To do so would increase health plan capacity to:
- Provide data for identifying and correcting disparities in health care delivery.
- Become consistent with emerging health information standards that are part of the National Health Information Infrastructure and the Consolidated Healthcare Informatics Initiative.
- Study racial and ethnic differences in access to health care, health status and health care delivery.
- Facilitate development of culturally appropriate outreach, prevention and intervention programs.
Thank you for your consideration of these recommendations.
John R. Lumpkin, M.D., M.P.H.
Chair, National Committee on Vital and Health Statistics
cc: HHS Data Council Co-Chairs