Research for all: building a diverse researcher community for the All of Us Research Program
- PMID: 39545358
- PMCID: PMC11648709
- DOI: 10.1093/jamia/ocae270
Research for all: building a diverse researcher community for the All of Us Research Program
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.
Keywords: biomedical research; capacity building; research personnel; stakeholder engagement; training programs.
Published by Oxford University Press on behalf of the American Medical Informatics Association 2024.
Conflict of interest statement
J.O.-M. has consulted for Sage Therapeutics (2017), Ibis Reproductive Health (2017-2018, 2020-present), Hims, Incorporated (2019-present), Folx, Incorporated (2019-present), and Upstream Inc. (2024). None of these engagements influenced or are pertinent to the work described in this manuscript. All other authors have no competing interests to declare.
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References
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- National Institutes of Health (NIH). Notice of NIH’s Interest in Diversity, Notice Number: NOT-OD-20-031. NIH, Division of Biomedical Research Workforce, Office of Extramural Research. Updated November 22, 2019. Accessed April 2, 2024. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-20-031.html
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- Asian Health Coalition. Asian Health Coalition, improving health & wellness for Asian, Pacific Islander, African, and other communities of color. AHC. Updated 2023. Accessed April 2, 2024. https://www.asianhealth.org/
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