RAISE: Elevating Person-Centered Data for Healthy Communities

The availability of person-centered data is critical to more robustly characterize populations, which facilitates solutions to address unmet medical needs. The goal of RAISE (Real-World Accelerator to Improve the Standard of Collection and Curation of Race and Ethnicity Data in Healthcare) is to curate existing efforts to improve data collection, share the data with leaders in health care, and provide an enduring resource to support organizations in transforming their data systems to support healthy communities. We developed 11 virtual workshops to share solutions and address common barriers in reporting, collecting, curating, and sharing demographic data with experts from health care delivery systems, payers, data technology companies, government agencies, research settings, and local communities. We summarized workshop proceedings into thematic areas and, through community polling, developed a multidimensional action framework to translate our learnings into actionable steps to address the most pressing gaps in the collection of person-centered data, using race and ethnicity data as an initial use case. Community partnership is central to cocreate data systems that curate information necessary to produce reliable data that support health care and healthy communities. Doing so requires respect, intentionality, standards, education, and collaboration with partners across the health care ecosystem, including the communities themselves.