Racial, Ethnic, and Primary Language Data Collection in the Health Care System:

Executive Summary

An overview of federal statutes, regulations and policies regarding the collection of race, ethnicity and language access.

The collection and reporting of data on race, ethnicity and primary language encompasses a wide array of policies and practices which influence why, how and when data is collected, reported and used. The collection of individualized data, including race and ethnicity, across federally supported health programs is essential to identify, measure, and eventually eliminate health disparities. This data is also vital to developing and implementing effective prevention, intervention, and treatment programs; developing meaningful standards to analyze the efficacy of data collection activities to ensure nondiscrimination; facilitating the provision of culturally and linguistically appropriate health care; and identifying and tracking similarities and differences in performance and
quality of care in various geographic, cultural and ethnic communities.
Pursuant to a grant from the Commonwealth Fund, through a subcontract from the Summit Health Institute for Research and Education (SHIRE), the National Health Law Program conducted this survey of the statutes, regulations, policies and procedures of federal agencies to identify when they call for the collection and reporting of data on race, ethnicity and primary language. Examination of whether such activities actually occur is beyond the scope of this survey.
The principal focus of this volume is on the health programs within HHS, but information on other federal agencies’ health programs is provided as a framework for reference and discussion. HHS has demonstrated considerable accomplishments in supporting data collection and reporting to reduce health disparities and provide quality, non-discriminatory care to the individuals and families it serves. HHS’ broad inclusion policy requires the collection of racial and ethnic data in all data collection activities it undertakes or sponsors. HHS has also issued guidance on providing language assistance to individuals with limited English proficiency by recipients of federal financial assistance, and developed culturally and linguistically appropriate services standards. Recently proposed regulations implementing Medicaid managed care and promulgated regulations governing the State Children’s Health Insurance Program (SCHIP) continue this exemplary emphasis on obtaining quality, reliable data.
Title VI of the Civil Rights Act of 1964 is considered the broadest mandate the federal government has to require collection and/or reporting of data on race, ethnicity and primary language. Title VI prohibits intentional discrimination on the basis of race or national origin in the provision of any services that are at all supported with federal funds. Title VI is a valuable tool not only to redress past discrimination, but also to monitor ongoing practices. It provides a legal foundation for the collection of racial, ethnic and primary anguage data by and from recipients of federal financial assistance even when an explicit statutory requirement to collect this data does not exist.
The research for this survey found no statutes that expressly prohibit collection of racial, ethnic or primary language data. Rather, this volume identifies over 80 programspecific statutes that require reporting or collection of data — most require data collection generally, a few directly address racial and ethnic data and none mention primary language data. For HHS programs that provide health care services (e.g. Medicaid, SCHIP, Medicare), three statutes require collection and/or reporting of racial and/or ethnic data and two more require collection of demographic or enrollee characteristics, which presumably includes race and/or ethnicity. The three statutes that explicitly mention race and ethnicity require:
  • grantees of the Maternal and Child Health (MCH) Services Block Grant to provide an annual report including, by racial and ethnic group, the number of deliveries in a state per year and the number of women who were provided prenatal, delivery or postpartum care under MCH or Medicaid;
  • the Substance Abuse and Mental Health Services Administration (SAMHSA) to evaluate mental health services by conducting surveys that include data on race and ethnicity; and
  • grantees of SAMHSA providing services to children of substance abusers to collect data on the ethnicity of the children served.
The two statutes that implicitly include racial and ethnic data in other data collection and/or reporting require:
  • states to report of the characteristics of children and families served by the State Children’s Health Insurance Program (SCHIP); and
  • grantees to report demographic data of individuals served through Ryan White Care Act programs.
For agencies that conduct clinical research or surveillance of diseases, five statutes address racial and/or ethnic data collection and/or reporting. All except one relate to health surveillance programs operated by the Centers for Disease Control and Prevention: two require collecting racial and ethnic data (birth defects/developmental disabilities and lead poisoning) and two require demographic data (cancer and infertility/sexually transmitted diseases). One statute requires the National Institutes of Health to operate a national database system and clearinghouse on women’s health research that includes either ethnic or racial data.

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