4 Changes to OMB Data Regulations That Could Improve Health Equity

The Office of Management and Budget (OMB) has an opportunity to improve race, ethnicity, language, sexual orientation, and gender identity data collection practices and health equity nationwide by updating its standards, according to an issue brief from Blue Cross Blue Shield Association (BCBSA) and the National Minority Quality Forum (NMQF).

“Data is more than numbers—it represents people. Our data must be as diverse and inclusive as our nation’s population,” Kim Keck, president and chief executive officer of BCBSA, said in the press release.

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

The issue brief centers around OMB’s 1997 Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (Directive No. 15). The directive regulates consistency in federal data-sharing and the 1997 iteration emphasized that data gathering practices should seek to mirror the nation’s diversity.

OMB’s directive requires that data collection include two category options for ethnicity (Hispanic or Latino and Not Hispanic or Latino) and five for race (American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Pacific Islander, and white). In contrast, the Centers for Disease Control and Prevention (CDC) includes over 900 categories for these two designations.

The directive does not include any requirement to indicate sexual orientation and gender identity (SOGI) data. Very few regulations or standardizing entities do.

OMB will release changes to Directive No. 15 in 2024. In light of the inadequate race and ethnicity categories and missing SOGI requirements, NMQF and BCBSA offered four recommendations for OMB to incorporate into upcoming regulatory changes.

First, OMB should use industry interoperability standards as a foundation for their new standards. Directive No. 15 should include a minimum standard for disaggregated race and ethnicity data. OMB could align its regulations with Fast Healthcare Interoperability Resources (FHIR) standards, BCBSA and NMQF suggested.

Additionally, OMB could align its standards with the Department of Heath and Human Services’s (HHS’s) Assistant Secretary for Planning and Evaluation (ASPE) and Office of Minority Health (OMH).

Under the ASPE and OMH standards, data standards must have been proven effective for national survey data collection. The data standard is considered the minimum and compliant entities have the freedom to go beyond these standards in gaining detailed data. The standards also comply with OMB regulations and are designed for data collection from individuals for population-based surveys.

Third, OMB should seek out and encourage stakeholder feedback on SOGI data inclusion in Directive No. 15. BCBSA and NMQF noted that the stakeholder pool should be diverse.

“High-quality, reliable data are essential to understanding where and how health disparities arise,” said Gary A. Puckrein, president and chief executive officer of NMQF. “Sufficiently collecting and exchanging data requires a multi-stakeholder approach and we look forward to working with players in the public and private sectors to establish a robust set of data standards and ultimately reduce health equities in the United States.”

Finally, the two organizations suggested that OMB apply its Directive No. 15 standards to both private and public entities. The universality of inequities in healthcare demands a universal response, NMQF and BCBSA explained.

“Through the adoption of comprehensive data collection standards, we can address health inequities head on and create a better system of health for all Americans,” Keck said.

BCBSA has been vocal about health equity data standardization in the past. In 2022, the organization released a data collection standardization roadmap. The plan addressed how to use data collection to improve quality of care disparities, access to care disparities, and disease prevalence disparities.

Other organizations including the Urban Institute and AHIP have offered additional recommendations, from building trust between minority communities and the healthcare industry to expanding the granular options for racial categories.