Informatics innovation to provide return of value to participant communities in the All of Us Research Program.

IF 4.7 2区 医学 Q1 COMPUTER SCIENCE, INFORMATION SYSTEMS Journal of the American Medical Informatics Association Pub Date : 2024-12-01 DOI:10.1093/jamia/ocae264
Brandy M Mapes, Rachele S Peterson, Karriem Watson, Melissa Basford, Elizabeth Cohn, Paul A Harris, Joshua C Denny
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引用次数: 0

Abstract

Objectives: 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.

Materials and methods: 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.

Results: 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.

Discussion: 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.

Conclusion: 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.

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信息学创新为参与我们所有研究项目的社区提供价值回报。
目标:我们所有人的研究计划利用先进的技术,科学和参与精密医学研究。我们描述了支持这一目标的信息学创新,并将价值回报给参与者群体和社区。材料和方法:所有我们研究计划的研究数据可供授权用户在所有我们研究工作台上使用。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。为了确保价值回报,我们概述了参与者对信息的访问权限。结果:我们所有人的研究中心允许广泛访问数据,而不考虑背景。所描述的创新植根于该项目的核心价值:参与是开放的,反映了美国的多样性;参与者是合作伙伴,可以获得他们的信息;透明、安全和隐私是最重要的;数据可广泛获取;这个项目促进了积极的改变。我们评估研究的影响,并反思我们所有人如何通过未来信息学的进步来增加参与者社区的现有价值回报。讨论:本项目将继续支持确保公平获取数据和向参与者回报价值的努力。展望未来,我们邀请社会各界加入我们。结论:我们所有的研究结果都可以改变临床护理,为指导方针提供信息,并为数据共享设定新的标准。价值的最终回报是更好地照顾所有人。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of the American Medical Informatics Association
Journal of the American Medical Informatics Association 医学-计算机:跨学科应用
CiteScore
14.50
自引率
7.80%
发文量
230
审稿时长
3-8 weeks
期刊介绍: JAMIA is AMIA''s premier peer-reviewed journal for biomedical and health informatics. Covering the full spectrum of activities in the field, JAMIA includes informatics articles in the areas of clinical care, clinical research, translational science, implementation science, imaging, education, consumer health, public health, and policy. JAMIA''s articles describe innovative informatics research and systems that help to advance biomedical science and to promote health. Case reports, perspectives and reviews also help readers stay connected with the most important informatics developments in implementation, policy and education.
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