Key Opportunities, Action Steps for Race, Ethnicity Data Collection

Race and ethnicity data collection is complex, but there are steps that health insurers—and the healthcare industry at large—can take to improve the process, according to a report from Urban Institute funded by Elevance Health (formerly Anthem).

The report leveraged a literature review of health insurers’ race and ethnicity data collection processes as well as insights from the Summit on Race and Ethnicity Data Collection for Health Equity, at which 27 stakeholders were present representing insurers, technology firms, advocacy groups, and other stakeholders.

The report highlighted four major findings regarding opportunities for improvement in race and ethnicity data collection.

First, consumer trust and community engagement are essential to race and ethnicity data collection. Lack of trust in healthcare entities—particularly in payers—often prevents members of marginalized groups from offering helpful data.

Engaging members in the process of creating race and ethnicity data categories is one way to build trust. Community partners who have already gained trust in their regions can also help reduce members’ concerns about sharing this data.

“Even if health plans engage with community partners, whether they be federally qualified health centers, other providers, or community-based organizations, to elicit R/E data, several commitments from health plans would increase trust,” the report stated. 

“These include being transparent about how the data would be used and involving community members in developing guardrails, paying community partners for their labor and engagement, sharing identified disparities back to the community, and engaging communities in developing solutions.”

Second, employers’ perceptions about the legal implications of sharing race and ethnicity—both accurate and inaccurate perceptions—can pose barriers to race and ethnicity data collection.

The report noted that some state laws prevent race and ethnicity data collection before enrollment and some states have privacy laws restricting the dispersal of race and ethnicity data. However, no state laws ban data collection post-enrollment or restrict data collection by group health plan insurers for privacy reasons.

However, federal clarification may be necessary in order to diminish unfounded concerns. Additionally, stakeholders should take steps to encourage employers and health plans to share data.

Third, data collection processes for race and ethnicity need to improve. More specifically, self-reported data collection methods need to be standardized, the summit participants urged.

The participants called on the federal government to issue guidance on standardizing race and ethnicity data collection and recommended public-private partnerships. 

Federal guidance should take into consideration several factors. First, self-reported data is preferable. Also, the ability to select multiple race and ethnicity categories is critical as well as the ability to decline to disclose race and ethnicity information. The options should be standardized but disaggregated and the standards should be consistent, but flexible.

Prior to the report’s publication, Blue Cross Blue Shield Association (BCBSA) released steps that the health insurance industry can take to standardize health equity data collection.

Finally, organizations need to assess and improve their capacity for race and ethnicity data collection and the resources necessary to carry out this function.

Employers and other stakeholders need to make this a priority. They may be able to boost reporting by leveraging employee resource groups or affinity groups. Employers may have to expand their data consent agreements and their technological capacity to collect the data. 

The federal government may support these efforts by offering funding for data collection and storage as well as for training.

The summit participants and stakeholders proposed three action steps for stakeholders to take in order to improve race and ethnicity data collection.

First, they recommended that stakeholders partner immediately with the understanding that these partnerships are a long-term endeavor and that they should not expect instant results.

Second, the summit participants and stakeholders determined that race and ethnicity data reporting should continue to be a voluntary action, but that organizations in a good position to collect this information should be given access to resources in order to fulfill that pursuit. 

Some participants argued that health plans should be required to gather this data but that the requirements should be phased in.

Third, government agencies should work with stakeholders and individuals to provide data security and patient privacy. For example, patient advocacy groups might establish guardrails for privacy and security, highlighting collaboration with organizations that work on informed consent and limiting health plans’ disaggregation of data.

Experts have previously highlighted the need for payers to understand members’ reluctance to share race and ethnicity data, communicate well with members, and gather information accurately. 

But stakeholders at the summit agreed that this effort will require not only payer participation, but an entire culture shift in the workplace and in the healthcare industry as a whole.