Is the health equity movement having an impact on the Biden-Harris Administration’s approach to health data?

Health equity is when everyone has access to the highest level of health possible, regardless of factors such as socioeconomic status, race, ethnicity, geography, or gender. AcademyHealth held a briefing exclusively for our organizational members to discuss how the health equity movement is shaping the Biden-Harris Administration's approach to health data. The panelists—Dr. Ninez Ponce, Mark Savage, and Dr. Brittany Brown-Podgorski—discussed progress the Biden-Harris Administration has made to deliver on promises to advance racial and ethnic equity by improving data collection, dissemination, and utilization. The moderator for the event was Dr. Margo Edmunds, the Vice President for Evidence Generation and Translations and the director of AcademyHealth's Center on Diversity, Equity, and Minority Engagement.

The first panelist, Dr. Ninez Ponce, is the director of UCLA’s Center for Health Policy Research, the chair of the Department of Health Policy and Management at UCLA’s Fielding School of Public Health, and a member of AcademyHealth's Board of Directors. Dr. Ponce leads the California Health Interview Survey (CHIS), the country’s largest state population-representative health survey. She explained how CHIS collects information about living conditions, education, trauma, and more to understand the mechanisms behind racial/ethnic inequities in health access and outcomes and detailed how recent Biden-Harris Administration policies were influenced by and might soon influence data equity. Her highlights were:

1. It is crucial to center equity in population surveys: CHIS works to eliminate health inequities by engaging community-based partners, policymakers, and local health departments through advisory committees. Focusing on equity and community collaboration strengthens how survey data can be leveraged to improve public policy.
2. Population surveys can advance health equity research and policy by collecting granular health and sociodemographic information and ensuring that the sample is representative by offering the survey in multiple languages. This can help us understand exactly what groups are experiencing poorer outcomes and tailor appropriate interventions.
3. Policy and guidance on data disaggregation can spur more studies when paired with research community innovations, resources, and better datasets. For example, the new enhanced ethnic and racial data collection standards that accompanied the Affordable Care Act, paired with surveys like CHIS, were associated with increases in journal publications that looked at Asian communities. The Interagency Working Group on Equitable Data, formed through a 2021 Biden-Harris Administration executive order, is working to facilitate better data collection, analysis, and use. Their work will be critical in stimulating new equity research.
4. The Interagency Working Group on Equitable Data’s report provides researchers with useful tools and guidelines for advancing health equity. It set goals for generating disaggregated statistical estimates and using survey data to understand the experiences of underserved groups. The working group recommended additional funding for the NCHS and the Census Bureau to improve data collection, measurement, and linkage capacities.
5. To achieve health justice, it’s important to remain accountable to the public. Data must be safeguarded against misuse and misclassification. Community involvement can aid in building trust and advancing health equity.

Mark Savage is the Managing Director, Digital Health Strategy & Policy, at Savage & Savage LLC and the Social Determinants of Health Policy Advisor for the Gravity Project. The Gravity Project builds consensus-based data standards to advance how researchers use, integrate, and exchange data related to the social determinants of health (SDOH). Mr. Savage’s presentation focused on the Biden-Harris Administration's efforts to advance health equity through the addition of standards and requirements to integrate SDOH data into the health care ecosystem. Under the 21st Century Cures Act, the Office of the National Coordinator established the United States Core Data for Interoperability as a minimum standardized set of structured data elements that certified electronic health record (EHR) technology must integrate and exchange. The Gravity Project developed and submitted SDOH data elements and exchange standards, such as food insecurity, homelessness, intimate partner violence, and social connection, based on feedback from experts and stakeholders nationwide. In the future, minority strain—the higher levels of stress members of minoritized groups experience —and digital literacy will be considered, among other domains. Mr. Savage discussed these key takeaways:

1. Developing consensus-based data standards for the SDOH and using policy levers to act on these drivers is crucial for improving health and health equity because social and environmental factors can explain 80-90 percent of an individual’s health status.
2. SDOH data should be accessible, not just to clinical sites and payers, but also to patients and community-based organizations, which provide marginalized individuals with crucial services, through web and mobile apps.
3. Many use cases, such as patient safety and research, depend on SDOH data that are included in the U.S. Core Data for Interoperability. These data can advance health equity and value-based care.
4. SDOH data and measures are being integrated across federal programs under the Biden-Harris Administration. For example, CMS published a final rule in 2022 that directs Medicare Advantage Special Needs Plans to include the Gravity Project’s SDOH data elements in health risk assessments and address the results in patients’ individualized care plans. Existing proposals will likely further integrate SDOH into federal programs. The Center for Medicare and Medicaid Innovation is working to require participants in all payment models to collect data on social needs and SDOH by 2030.

Dr. Brittany Brown-Podgorski is an Assistant Professor of Health Policy and Management at the University of Pittsburgh. Her research examines health disparities and the policy environment as a SDOH. Dr. Brown-Podgorski focused on data improvements needed to advance health equity:

1. What gets measured gets changed: we cannot move the needle on health inequity unless we’re first able to measure it empirically. When data on health inequity is available, researchers are more easily able to examine it and propose recommendations to address disparities. Because existing data sources weren’t built with equity in mind, it’s difficult to understand the full impact of sociodemographic factors on health.
2. Continuing to improve data is key to answering the Biden-Harris Administration’s call to advance health equity: data sources should be improved to ensure that minoritized groups, such as communities of color, gender and sexual minorities, and individuals with disabilities, are equitably captured. Data linkage capabilities should be enhanced by using external sources, such as neighborhood deprivation data and data from social service programs, to expand SDOH data and help us understand how these factors impact health inequities.
3. The Biden-Harris Administration could take steps to further advance health equity: it could improve access to data on the SDOH for Medicaid enrollees by investing in an annual national survey similar to those that Medicare already distributes and making administrative data sources more affordable for researchers.

The Biden-Harris Administration and the research community have made important strides to advance health equity through more robust data. While these strides have improved health services researchers’ ability to investigate and address inequities, federal policymakers must continue to support efforts to improve the quality and accessibility of health data.

Data equity is central to AcademyHealth's work. In addition to including data equity in discussions at ARM this year, AcademyHealth's Methods and Data Council and Health Data subcommittees are deeply engaged in all dimensions of appropriate data use.

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