BSBSA pushes for better data collection around race, gender

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The Blue Cross Blue Shield Association (BCBSA), partnering with the National Minority Quality Forum (NMQF), has released recommendations for improving and standardizing data collection methods around race, ethnicity, and language (REL) and sexual orientation and gender identity (SOGI).

BCBSA said this is to reduce health disparities and increase access to higher-quality care for underserved populations.

The organization pointed to significant inequities that exist throughout the U.S. healthcare system, resulting in preventable negative health outcomes for historically marginalized racial, ethnic, socioeconomic and LGBTQ+ communities. 

The lack of comprehensive data, as well as outdated standards for collecting information, are contributing factors to the growing health equity gap, the group said.

"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. Standardized, precise data provides opportunities for insurers, healthcare providers and patient advocates to design and implement targeted health solutions to better meet the needs of disproportionately impacted communities."

WHAT'S THE IMPACT?

In 1977, the Office of Management and Budget (OMB) introduced Statistical Policy Directive No. 15, which established a set of minimum standards to ensure the federal government's ability to compare information and data across federal agencies, as well as document the effectiveness of federal programs in serving the diverse populations. 

This directive was last updated in 1997 to encourage further standards for maintaining, collecting and presenting data on race and ethnicity. Now almost 30 years later, OMB is initiating a formal review to revise the directive by the summer of 2024.

BCBSA and NMQF recommended that a number of solutions be included in the updated directive.

For one, they said, the directive should have clear and consistent requirements for the collection of REL and SOGI data that include a minimum standard for disaggregated race/ethnicity collection, and that are consistent with industry interoperability standards.

They also said OMB should incorporate the current data standards put forth 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.

According to the organizations, OMB should also, intentionally and proactively, elicit and accept additional input from diverse stakeholders regarding SOGI data collection and utilization into the Directive No. 15 update.

Finally, 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 healthcare stakeholders, including payers and providers, the organizations said.

THE LARGER TREND

The accuracy, or lack thereof, of data on race and ethnicity has been a topic of conversation for some time. A 2022 Department of Health and Human Services' Office of the Inspector General report found there are significant inaccuracies in Medicare data on race and ethnicity, which is especially troublesome given that the Centers for Medicare and Medicaid Services is looking to collect such data from providers and payers.

This inaccurate data, the federal agency claimed, limits the ability to assess health disparities. Limited race and ethnicity categories and missing information contribute to inaccuracies in the enrollment data.
 

Twitter: @JELagasse
Email the writer: Jeff.Lagasse@himssmedia.com