https://orcid.org/0000-0001-6202-6001
-
Views
-
Cite
Cite
Suzanne Bakken, Elaine Sang, Berry de Brujin, Returning value to communities from the All of Us Research Program through innovative approaches for data use, analysis, dissemination, and research capacity building, Journal of the American Medical Informatics Association, Volume 31, Issue 12, December 2024, Pages 2773–2780, https://doi.org/10.1093/jamia/ocae276
Close - Share Icon Share
Extract
In 2015, the White House and the National Institutes of Health announced the inception of the All of Us Research Program “to bring us closer to curing diseases like cancer and diabetes, and to give each of us access to the personalized information we need to keep ourselves and our families healthier.” Now approaching the first decade, the vision to enhance innovation in biomedical research remains strong with the goal of moving the United States into an era where medical treatment and other health interventions can be tailored to individuals.
As of October 2024, there are over 842 000 participants who have consented to participate in the All of Us Research Program. The resulting data set, which is accessed through the All of Us Public Data Brower (aggregated data only) or Researcher Workbench reflects three novel aspects: (1) enriched enrollment for racial, ethnic, sexual, gender, and geographic minority populations to correct for past sampling bias in precision medicine studies, (2) inclusion of social determinants of health (SDoH), electronic health record (EHR), and genomic data, and (3) designed for use by scientists with a broad variety of backgrounds and different research (eg, research-intensive universities, community-based organizations) and educational settings (eg, Historically Black Colleges and Universities, high schools).
