Equity Aid: Feds Can Improve Race, Ethnicity Data Collection

New analysis recommends practical steps the federal government can take to improve how it collects and uses data to advance health equity.

Federal Action Is Needed to Improve Race and Ethnicity Data in Health Programs is the first of two planned reports from Grantmakers in Health (GIH) and NCQA, produced with funding from the Commonwealth Fund. (To see the report, click the link above. Then expand the Research section of the page.)

The authors reviewed prior research, interviewed almost two dozen experts and identified four core problems:

  • Federal standards leave critical data gaps.
  • The completeness and quality of race and ethnicity data vary widely across programs.
  • Ways of data sharing are not standardized across federal programs. Even when data are available, there is limited use of the data to gain insights into equity.
  • As technology advances, federal patient privacy protections may not be adequate.

Constructive, Practical Improvement

The report offers 11 ways for federal actions to drive collection of complete and accurate race and ethnicity data and their use in understanding equity.

Suggestions focus on four areas:

  • Changes in data standards and systems, such as reviewing and updating Office of Management and Budget (OMB) data standards.
  • Incentives and requirements, which could include the Department of Health and Human Services (HHS) requiring state and local health departments, Medicaid programs, public health and human services programs to audit their race and ethnicity data to reveal gaps.
  • Education and technical assistance, such as providing training and financial help to improve data systems and interoperability.
  • Congress should review and amend as necessary laws such as HIPAA and the Affordable Care Act to encourage collection and information sharing.

What’s Different

This report stands out for reasons apart from its focus on constructive solutions:

  • Timeliness: The Executive Summary relates data collection to the crisis that has roiled health care for the past year and a half: “The COVID-19 pandemic laid bare the inequities in health and health care in the US, but the lack of adequate data on race and ethnicity prevented an effective response.”
  • Breadth: “We took a more comprehensive look at data collected in federal insurance and public health programs than has been taken before,” said co-author and NCQA Research Scientist Phil Saynisch, PhD. “It’s a useful roundup of data that folks might not have seen in one place.
  • Imminent Follow-up: Before the end of the year, GIH and NCQA will publish a second report that includes deeper analysis of the data, barriers that organizations encounter in collecting race and ethnicity data, and recommendations that extend beyond the federal government.

Look for more information here soon. NCQA thanks our colleagues at GIH and the Commonwealth Fund for partnering with us in this rewarding work.