The Participant Center: Empowering All of Us Research Program participation across the United States

参与者中心：增强我们所有人参与美国各地研究计划的能力

• 批准号: 10774158
• 负责人: Eric Jeffrey Topol
• 金额: $ 5400万
• 依托单位: SCRIPPS RESEARCH INSTITUTE, THE
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-01 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10774158
• 关键词: Acceleration; All of Us Research Program; Ancillary Study; Area; Artificial Intelligence; Biomedical Research; Blood; Categories; Childhood; Collaborations; Collection; Communities; Consent; Data; Data Collection; Decision Making; Dedications; Development; Enrollment; Ensure; Equity; Ethnic Origin; Experimental Designs; Federally Qualified Health Center; Goals; Health; Healthcare; Impact evaluation; Individual; Infrastructure; Lead; Learning; Light; Measures; Mediating; Mission; Participant; Persons; Population; Process; Race; Recommendation; Research; Resources; Review Literature; Risk; Saliva; Surveys; Technology; Testing; Touch sensation; United States; United States National Institutes of Health; Urine; Work; cost; cultural competence; data sharing; digital; empowerment; experience; high reward; high risk; improved; innovation; interest; multimodality; novel; novel strategies; opportunity cost; outreach; programs; recruit; response; retention rate; success

A. Abstract The Participant Center (TPC) will 1) maintain capabilities that enable full All of Us Research Program (All of Us) participation across the United States (US) and 2) lead innovation in the participant experience in support of program goals. TPC is an alliance of more than 25 partners, led by Scripps Research. TPC makes it possible for interested individuals anywhere in the U.S. to join and remain engaged in All of Us. TPC will reach individuals where they are through approaches ranging from light touch digital outreach to high touch, in-person one-on-one support. TPC strategies and tactics aim to support the recruitment of over 200,000 new baseline participants, while upholding the program’s goal to reflect the rich diversity of the US by including 50% participants who have been historically underrepresented in biomedical research (UBR) based on their race and/or ethnicity, and 80% participants who are UBR based on any program-defined category. We aim to maintain at least 75% active retention, in line with TPC’s current active retention rate of 86%. Drawing on our experience in All of Us since 2016, including the recruitment of over 97,000 participants and support of biospecimen collection from over 44,000 participants, we will improve on the processes and relationships we have built to further the program’s mission to enable individualized health care. TPC will utilize All of Us Participant Labs (APL) to implement participant-facing innovation that accelerate progress toward program goals. Employing streamlined processes and dedicated innovation infrastructure to carry out a portfolio of high risk/high reward initiatives, we will manage an innovation pipeline while minimizing program risk. Data-driven decisions will be made in each step of the process, from literature reviews informing idea development to impact evaluations that measure participant responses. Opportunity cost will be carefully considered, and projects will be abandoned if they are a suboptimal use of resources. Initiative ideas will be solicited from all consortium stakeholders and selected through a process that includes alignment with NIH goals and roadmaps and the APL focus areas of enrollment, engagement, retention, biospecimen collection, and research data collection. Beginning with APL initiatives, we aim to combine novel data collection with multi-modal artificial intelligence (AI) to return personalized information and improve participant health.

A.摘要 参与者中心(TPC)将1)维护支持我们所有人进行全面研究的能力 计划(我们所有人)参与全美(美国)和2)引领创新 参与者在支持计划目标方面的经验。TPC是一个由超过25个合作伙伴组成的联盟， 由斯克里普斯研究公司领导。 TPC使美国任何地方感兴趣的个人都有可能加入并留下来 对我们所有人都很投入。TPC将通过各种方法接触到他们所在的个人 从轻触数字外展到高触控、面对面一对一支持。TPC战略和 战术旨在支持招募20多万名新的基线参与者，同时坚持 该计划的目标是通过包括50%的参与者来反映美国的丰富多样性 历史上在基于种族和/或的生物医学研究(UBR)中的代表性不足 种族，以及80%的参与者是基于任何计划定义的类别的UBR。我们的目标是 保持至少75%的主动保留率，与TPC目前86%的主动保留率一致。 借鉴我们自2016年以来在我们所有人中的经验，包括征聘97000多人 参赛者和支持从超过44,000名参赛者中收集生物素，我们将 改进我们已经建立的流程和关系，以推进该计划的使命 实现个性化医疗服务。 TPC将利用我们所有参与者实验室(APL)实施面向参与者的创新 加快实现计划目标的进度。采用简化的流程和专用的 创新基础设施开展一系列高风险/高回报计划，我们将 管理创新管道，同时将计划风险降至最低。数据驱动的决策将是 在这个过程的每一个步骤中，从文献综述到想法的发展到影响 衡量参与者反应的评估。我们将仔细考虑机会成本， 如果项目对资源的利用不是最优的，那么它们将被放弃。主动性的想法将是 向所有财团利益相关者征求意见，并通过包括协调的流程进行选择 具有NIH的目标和路线图以及APL的注册、参与、保留、 生物质学家收集，研究数据收集。从APL计划开始，我们的目标是 将新颖的数据收集与多模式人工智能(AI)相结合，返回个性化 信息和改善参与者的健康。