New data collection recommendations to address health disparities

The Blue Cross Blue Shield Association (BCBSA) is recommending industry-wide adoption of standardized data collection to improve care in underserved communities.

BCBSA is working to address health disparities by calling for industry-wide standards in the way data is collected regarding race, ethnicity, language (REL) and sexual orientation and gender identity (SOGI). As part of that effort, BCBSA is partnering with the National Minority Quality Forum (NMQF), a nonprofit, nonpartisan organization dedicated to eliminating health disparities through research and education.  

The problem 

Significant inequities exist throughout the U.S. health care system, resulting in preventable negative health outcomes for historically marginalized racial, ethnic, socioeconomic, and LGBTQ+ communities. These inequities are further exacerbated without high-quality, reliable data that is standardized at the federal level to ensure those most impacted are getting the care they need. 

Background 

In 1977, the United States Office of Management and Budget (OMB) established a data collection directive – known as Statistical Policy Directive No. 15 - to promote uniformity and comparability on race and ethnicity and evaluate how federal programs were impacting diverse communities. The policy was updated in 1997. Currently, there are no mandated federal standards for REL and SOGI data across all stakeholders.

"Data is more than numbers—it represents people," said BCBSA President and CEO Kim Keck. "Our data must be as diverse and inclusive as our nation’s population." Read full press release.

BCBSA recommendations 

BCBSA and NMQF are calling for standardization in the collection of REL and SOGI data to improve health outcomes with a recommendation that OMB’s Directive No. 15 be updated with the following: 

• Directive No. 15 should provide clear and consistent requirements for the collection, of REL and SOGI data that include a minimum standard for disaggregated R/E collection and are consistent with industry interoperability standards (e.g., Fast Healthcare Interoperability Resources (FHIR) standards).  
• OMB should incorporate the current data standards promulgated by the DHHS Assistant Secretary for Planning and Evaluation/Office of Minority Health into Directive No. 15 and require that these be the minimum standard categories for collecting disaggregated REL data.    
• OMB should intentionally and proactively elicit and accept additional input from diverse stakeholders regarding SOGI data collection and utilization into the Directive No. 15 update.  
• OMB should enforce non-voluntary, uniform and universal adoption of the updated OMB Directive No. 15 standards upon release in 2024 for all government agencies, and all private sector health care stakeholders including payers and providers.  

Click here to read the issue brief from BCBSA and NMQF.

Additional reading: 

How data drives health equity solutions 

CDC: Collecting data overview  

The Blue Cross and Blue Shield Association is a national federation of independent, community-based and locally operated Blue Cross and Blue Shield companies..