Making Oneself "Fit": Community Perspectives on Disaggregated Race and Ethnicity Data Collection and Reporting in...

Patient race/ethnicity data collection in most U.S. health systems abide by federal standards, determined by the federal Office of Management and Budget. Yet, decades of research show that reliance on these categories alone limits understanding of within-group health disparities, systematically erasing key groups from health data. Because granular race/ethnicity data is complex and patients may be hesitant to disclose this personal information, it is important for health leaders to consider community perspectives when making decisions about race/ethnicity data procedures. As such, this study uses community focus groups to understand: (1) how individuals representing different racial/ethnic identities perceive the collection of race/ethnicity in healthcare settings; (2) differences in opinions between disaggregated race/ethnicity data collection instruments and those using federal standards; and (3) recommended practices for collecting race/ethnicity from patients. Participants self-selected into 13 focus groups and one key informant interview based on the race/ethnicity with which they most closely identified. Audio recordings from these groups were transcribed and evaluated using thematic content analysis. Among the 83 total participants in this study, there was a strong preference for more flexible and specific options for self-identifying race/ethnicity in healthcare settings. Participants also felt comfortable disclosing granular race/ethnicity to health providers but expressed discomfort with disclosing this information for other purposes. Recommendations for healthcare leaders include ensuring patients receive detailed communication about race/ethnicity data use and purpose, allowing multiple category selection, keeping the list of disaggregated response options short so as to not overwhelm patients, and providing a free text option to ensure inclusivity.