Innovative research plays a vital role in tackling health care challenges and shaping health policy considerations. Additionally, it can foster a deeper understanding of the evolving needs of individuals and communities, paving the way for evidence-based policy decisions that aim to make health care more affordable and equitable. With technological advancements generating expansive and nearly ubiquitous data sources, researchers, and clinicians as well as public sector professionals and policymakers are increasingly relying on data to drive decision-making. To address the issues that the research community faces and to promote open and equitable research, AcademyHealth conducts a range of activities to advance data equity, support data learning networks, and extend access to highly valuable datasets for research.
In recent years, there has been a notable increase in conversations about the significance of racial equity and justice. As the public and private sectors as well as communities re-examine policies through the lens of anti-racism and equity, it is becoming increasingly essential to assess the data that underlies these disparities. A heightened awareness of data equity and inclusivity is permeating conversations among the research and policy communities. AcademyHealth is contributing to these efforts through the management of the Robert Wood Johnson Foundation’s (RWJF) Community Research for Health Equity (CRHE) program and sessions at our 2023 Annual Research Meeting, among other activities.
As part of the CRHE program, two research teams are focusing their efforts on building more inclusive data surveillance systems. John Lowe and his team at the University of Texas at Austin along with Dennis Coker, Principal Chief of the Lenape Indian Tribe of Delaware, were awarded funds to collect health status data among marginalized Native American communities within the Delmarva region to inform health system approaches for addressing the physical, social, and mental health needs of these communities. Using a tribal-specific Behavioral Risk Factor Surveillance System (BRFSS) survey, the research team seeks to establish general baseline health descriptions, COVID-19 status, and racial discrimination factors for each tribal community. Similarly, Kelli Caseman and her team at Think Kids in West Virginia were funded under this program to assess how West Virginia compiles and reports health surveillance data in order to build a more inclusive surveillance system. Their team is examining how data is collected and shared, how marginalized groups are disproportionately affected, and how to develop solutions for a more representative system.
At the 2023 Annual Research Meeting hosted by AcademyHealth, over 60 Diversity, Equity, Inclusion, and Accessibility related sessions are on the agenda. During the conference, Dr. Ninez Ponce, Ph.D., M.P.P., an expert on survey-based research will moderate a special session on Using Demographic Data to Ensure Equity and Data Quality. This discussion centers on data equity and data quality with perspectives from a diverse panel on where we are now and how we might improve data equity. Another session titled Measuring Structural Racism: Update on Frameworks and Approaches in Health Equity Research, chaired by health services researcher Shekinah Fashaw-Walters, Ph.D., MSPH, will feature a discussion with a distinguished team of researchers who have approached the measurement and quantification of structural racism from different perspectives and disciplines. Both these sessions will highlight the importance of data in understanding and addressing equity issues in health care.
Data Learning Networks
While data equity is essential, so, too, is supporting researchers’ abilities to appropriately collect, maintain, and utilize data. Equipping researchers with the right skill set and capabilities is necessary to produce high-quality research, which contributes to knowledge and action. With support from the Commonwealth Fund and RWJF, AcademyHealth’s Evidence-Informed State Health Policy Institute established the Medicaid Data Learning Network (MDLN) by leveraging our broad network of Medicaid policymakers, university researchers, and stakeholders. As the T-MSIS (Transformed Medicaid Statistical Information System) Analytic Files (TAF) represents a highly complex dataset with varying data quality, eligibility categories, and data elements across states, MDLN helps ensure Medicaid research is high quality, relevant, and impactful. This effort serves as an opportunity for researchers to share learnings and approaches to distill key methodological standards using the TAF dataset. The network recently published their Year 1 summary report which outlines some lessons learned and opportunities for both the research and policy communities. As the network enters their second year, they have expanded to include more university and institutional partnerships, offering more opportunities for collaboration and learning.
RWJF’s signature research program, Health Data for Action (HD4A) managed by AcademyHealth, has been instrumental in offering researchers access to valuable health datasets from diverse data providers and supporting evidence-based research in the field. Furthermore, through technical assistance activities this program has helped researchers develop the skillset required to effectively disseminate their findings with a wide array of stakeholders, including policymakers.
A new call for proposals from HD4A offers no-cost access to timely, relevant data that can inform policy to make health care more affordable and equitable. In the latest CFP, researchers will have the opportunity to choose from any of the 16 different datasets listed below, which focus on a variety of data types such as electronic health record and clinical data; claims and encounter data; and transparency in coverage data. The program will award up to 20 successful applicants with access to the selected data set at no cost to the grantee; no financial awards will be given with these grants. Additionally, funding is available to support up to six first-time principal investigators at $100,000 per project.
- Electronic Health Record and Clinical Data (including COVID-19 research database)
- Claims and Encounter Data (including All Payer Claims Databases, Medicare Advantage enrollment and encounter data, and T-MSIS data)
- Transparency in Coverage Data
Researchers are encouraged to examine a wide variety of topics including public health surveillance and population health, diagnostic quality, health effects of COVID-19, health outcomes, trends in insurance markets, prevalence of chronic disease, and rate competitions among others. An applicant information webinar will take place on Tuesday, July 18 from 1:00 – 2:00 p.m. ET. This webinar will provide an overview of the CFP and offer an opportunity for potential applicants to ask AcademyHealth staff questions about the program, the funding opportunity, and the grantmaking process. For more information and to apply, visit RWJF’s website here.