Data on patients’ health care access and quality by race and ethnicity are essential to developing effective interventions that advance health equity. But while efforts to collect such data are growing, little is known about the extent to which patient race and ethnicity data are being used to address inequities. Moreover, less attention has been paid to efforts to collect the race and ethnicity data of health care providers, which could also inform effective interventions to advance equity.

Why this matters

Collection of individuals’ race and ethnicity data by health care entities to understand and address heath inequities is accelerating, particularly since the COVID-19 pandemic. But many stakeholders remain skeptical about whether the potential benefits of complete and accurate data are worth the investments needed to improve data collection infrastructure and practices and build analytic capacity. Gaining a broader understanding of the ongoing efforts to collect and use such data to tackle health disparities could facilitate progress in various organizations across the health sector.

What we found

• Collection of individuals' race and ethnicity data for to advance heath equity is happening, but it remains inconsistent and incomplete. Though interest in data collection may be stronger than ever, many systemic barriers to collecting patient demographic data hinder greater progress.
• Health care organizations are increasingly collecting a variety of other demographic and social needs data and using broader measures of access and quality, recognizing that race and ethnicity data are important but insufficient to monitor and achieve health equity.
• Collection and sharing of provider race and ethnicity data appears very limited. Interest in collecting provider demographic data to improve consumer access to culturally appropriate and effective care seems high. But we identified few examples of organizations making significant efforts to collect and share such data, heard concerns about potential discrimination, and found that the current regulatory and policy environment is not supportive of such efforts.
• Initiatives that use individual race and ethnicity data to develop and implement interventions that advance health equity appear more limited; most activity seems more narrowly focused on improving the collection of such data.
• Public and private action could improve the collection and use of race and ethnicity data. This could include greater pressure from federal and state governments as well as several organizational changes:
  • Federal and state actions include: 1) providing requirements, guidance, and resources to support systematic and comprehensive data collection; 2) standardizing and aligning data to support its usability, and 3) implementing accountability, incentives, and consequences to support the use of data to reduce health disparities.
  • Institutional facilitators to progress include: 1) securing and cultivating leadership support, 2) institutionalizing commitment to health equity within an organization, and 3) maintaining focus on the end goal when facing obstacles.

How we did it

This brief draws on publicly available resources and interviews with leaders and analysts in the health care sector familiar with or engaged in efforts to collect and use individual or health care provider race and ethnicity data to reduce health inequities.