Health plans can take the lead in gathering more diverse health data. Here's how

Health plans are poised to play a key role in addressing health disparities and inequities, but access to critical data remains a huge hurdle.

A new study from the Urban Institute, a left-leaning think tank, the American Benefits Council and Deloitte paves a pathway for payers to more effectively gather race and ethnicity data that are crucial to making a dent in health inequity. The report, which was backed by Elevance Health, combines input from commercial insurers, employers, providers, community organizations and researchers to build the data gathering road map.

For one, health plans need to be transparent about why they want to collect these data and ensure there are guardrails in place to protect the information while also avoiding potential harms to historically marginalized communities and people. Building that trust is crucial to diversifying data sets, the researchers said.

A related but separate survey conducted by Deloitte found that most people are willing to share race and ethnicity data with their health insurer, but 60% worried those data would be shared with or sold to a third party.

In addition, they need to be thinking about ways to address legal concerns about gathering and sharing data among employers and others as well as encouraging the feds the establish further guidance in this area.

Gathering the necessary data also means embedding that as a goal and building a collective understanding of why that work is valuable, according to the report. Insurers will also need to build ties with community groups and organizations to better collect data.

“Health plans play a critical role in reducing health disparities, yet we sometimes lack complete data to support a whole health approach, which is why we funded this work,” said Shantanu Agrawal, M.D., chief health officer at Elevance Health, in the announcement. “The insights and recommendations in this report underscore the importance of transparency and partnership as we work to improve our collection and use of race/ethnicity data to advance health equity.”

Insurers also can and should take a leading role in contributing to federal efforts to build standards for self-reported data that are more inclusive and encourage greater voluntary identification of race and ethnicity information.

Health plans must also invest in new data standards, interoperable systems and training on data collection for health workers on the front lines, the report says.

“Having more complete data increases the likelihood that people in these communities will receive care that is tailored to their needs, leading to more positive health outcomes," said Jennifer Haley, senior research associate at the Urban Institute. "At the same time, guardrails are needed to protect patient privacy and security and to ensure that marginalized groups of people are not discriminated against or harmed by the health care system.”