Informatics innovation to provide return of value to participant communities in the All of Us Research Program.
review · Level V
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- Record sourced from PubMed, PMID 39657748.
- Also identified by DOI 10.1093/jamia/ocae264 and PMC identifier 11631064.
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Abstract
The All of Us Research Program harnesses advances in technology, science, and engagement for precision medicine research. We describe informatics innovations which support that goal and return value to the participant cohort and community. Research data from the All of Us Research Program are available to authorized users on the All of Us Researcher Workbench. We describe the technical infrastructure that enables data access and usage for researchers. Participants are considered partners. To ensure return of value, we outline participant access to information. The All of Us Research Hub allows broad access to data, regardless of background. The innovations described are rooted in the program's core values: participation is open and reflects the diversity of the United States; participants are partners and have access to their information; transparency, security, and privacy are of the highest importance; data are broadly accessible; and the program promotes positive change. We assess research impact and reflect on how All of Us can increase existing return of value to participant communities through future informatics advancements. The program will continue to support efforts to ensure equitable access to data and return of value to participants. Looking ahead, we invite the community to join us. All of Us research findings can change clinical care, inform guidelines, and set a new bar for data sharing. The ultimate return of value is better care for all.
Medical subject headings
- Medical Informatics