Improving Data on Race and Ethnicity: A Roadmap to Measure and Advance Health Equity

Racial and ethnic health disparities have been documented in the United States for over a century. In 1985 the Heckler Report provided the first national summary of these disparities, leading to the creation of the Department of Health and Human Services Office of Minority Health. In the 1990s and 2000s the study of gaps in health care access, utilization, and outcomes by race and ethnicity grew rapidly, but confronted a critical limitation of the available data: the lack of standardized, self-identified race and ethnicity. The COVID-19 pandemic provided stark proof that data limitations are far from being addressed, which has real consequences for the study and practice of public health. Though data have improved since the beginning of the pandemic, the Centers for Disease Control and Prevention can only identify the race and ethnicity of less than 60% of individuals testing positive for COVID-19 or receiving vaccines, significantly limiting the ability of policymakers and health care stakeholders to measure and improve equity in the pandemic?s effects and mitigation. This Roadmap builds on an earlier report, Federal Action Is Needed to Improve Race and Ethnicity Data in Health Programs,1 in three critical respects. First, it expands on that report?s summary of the current state of race and ethnicity data in health care programs, offering more detail about whether and how race and ethnicity data are collected across a range of insurance programs, federally administered health systems and public health databases. Second, it summarizes a range of barriers to improving collection and use of race and ethnicity data, and identifies general principles for improving the data. Finally, it expands the range of recommendations for improving the data, considering not only actions the federal government could take, but also identifying actions for states and the private sector. To advance these goals, the project team carried out a targeted search for information on the completeness and quality of race and ethnicity data; an environmental scan to identify previous reports summarizing challenges to collection and use of race and ethnicity data; and key informant interviews to better define and understand barriers and opportunities. The environmental scan and informant interviews pointed to a consistent set of barriers faced by health care organizations, including: (1) Legal and privacy concerns around collection and use of race and ethnicity data. (2) Lack of standardized collection procedures and category definitions. (3) Technical barriers to collection and storage of data. (4) Cost of collection and lack of financial incentives or program requirements to collect race and ethnicity data. (5) Lack of staff and resources in health care organizations to analyze and use data once collected. (6) Resistance from patients and clinical providers to collection and use of race and ethnicity data. Despite these challenges, prior reports and data from the key informant interviews pointed to several opportunities to improve collection and use of race and ethnicity data: (1) Highlight early, successful adopters of expanded race and ethnicity data collection. (2) Disseminate existing technical support resources and data standards. (3) Educate patients and providers about the potential of improved race and ethnicity data to improve outcomes and equity. (4) Provide incentives to encourage data collection and finance necessary technology investments and staffing. (5) Where incentives fail to produce action, consider mandates (e.g., require collection to meet certain standards as a condition of participating in federal programs or demonstration projects). (6) Identify existing resources that could be leveraged to improve analysis of health equity until consistent, complete, self-reported race and ethnicity data are available. The report concludes with a series of recommendations for federal and state regulators and legislators, health systems and health insurance companies, and a range of other health sector stakeholders. Recommendations are grouped under the following themes: (1) Improve data collection, storage and transfer systems. (2) Evaluate and expand incentives and requirements to collect. (3) Provide updated technical assistance to stakeholders. (4) Review, clarify and, if necessary, amend regulations.