Publication Date
1-1-2025
Journal
Journal of the American Medical Informatics Association
DOI
10.1093/jamia/ocae270
PMID
39545358
PMCID
PMC11648709
PubMedCentral® Posted Date
11-14-2024
PubMedCentral® Full Text Version
Post-print
Published Open-Access
yes
Keywords
United States, Humans, Research Personnel, National Institutes of Health (U.S.), Biomedical Research, Cultural Diversity, biomedical research, training programs, stakeholder engagement, research personnel, capacity building
Abstract
OBJECTIVES: The NIH All of Us Research Program (All of Us) is engaging a diverse community of more than 10 000 registered researchers using a robust engagement ecosystem model. We describe strategies used to build an ecosystem that attracts and supports a diverse and inclusive researcher community to use the All of Us dataset and provide metrics on All of Us researcher usage growth.
MATERIALS AND METHODS: Researcher audiences and diversity categories were defined to guide a strategy. A researcher engagement strategy was codeveloped with program partners to support a researcher engagement ecosystem. An adapted ecological model guided the ecosystem to address multiple levels of influence to support All of Us data use. Statistics from the All of Us Researcher Workbench demographic survey describe trends in researchers' and institutional use of the Workbench and publication numbers.
RESULTS: From 2022 to 2024, some 13 partner organizations and their subawardees conducted outreach, built capacity, or supported researchers and institutions in using the data. Trends indicate that Workbench registrations and use have increased over time, including among researchers underrepresented in the biomedical workforce. Data Use and Registration Agreements from minority-serving institutions also increased.
DISCUSSION: All of Us built a diverse, inclusive, and growing research community via intentional engagement with researchers and via partnerships to address systemic data access issues. Future programs will provide additional support to researchers and institutions to ameliorate All of Us data use challenges.
CONCLUSION: The approach described helps address structural inequities in the biomedical research field to advance health equity.
Included in
Biological Phenomena, Cell Phenomena, and Immunity Commons, Biomedical Informatics Commons, Genetics and Genomics Commons, Medical Genetics Commons, Medical Molecular Biology Commons, Medical Specialties Commons