Mapes Brandy M, Peterson Rachele S, Watson Karriem, Basford Melissa, Cohn Elizabeth, Harris Paul A, Denny Joshua C
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN 37203, United States.
All of Us Research Program, Office of the Director, National Institutes of Health, Bethesda, MD 20817, United States.
J Am Med Inform Assoc. 2024 Dec 1;31(12):3042-3046. doi: 10.1093/jamia/ocae264.
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.
“我们所有人”研究项目利用技术、科学和参与方面的进展来开展精准医学研究。我们描述了支持该目标并为参与者群体和社区带来价值回报的信息学创新。
“我们所有人”研究项目的研究数据可供授权用户在“我们所有人”研究者工作平台上获取。我们描述了使研究人员能够访问和使用数据的技术基础设施。参与者被视为合作伙伴。为确保价值回报，我们概述了参与者获取信息的途径。
“我们所有人”研究中心允许广泛访问数据，无论背景如何。所描述的创新源于该项目的核心价值观：参与是开放的，反映了美国的多样性；参与者是合作伙伴，能够访问自己的信息；透明度、安全性和隐私至关重要；数据可广泛获取；并且该项目促进积极变革。我们评估研究影响，并思考“我们所有人”项目如何通过未来的信息学进步增加对参与者社区现有的价值回报。
该项目将继续支持确保公平获取数据和为参与者带来价值回报的努力。展望未来，我们邀请社区加入我们。
“我们所有人”的研究结果可以改变临床护理、为指南提供信息，并为数据共享树立新的标准。最终的价值回报是为所有人提供更好的护理。
