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) 保持支持我们所有人研究的能力 计划（我们所有人）在美国 (US) 各地参与，并且 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可以加入并留下来 参与我们所有人。 TPC 将通过各种方法接触到个人 从轻触式数字推广到高触感、面对面的一对一支持。 TPC 策略和 策略旨在支持招募超过 200,000 名新基线参与者，同时坚持 该计划的目标是通过纳入 50% 具有以下经历的参与者来反映美国的丰富多样性 由于种族和/或，历史上生物医学研究 (UBR) 中的代表性不足 种族，并且 80%​​ 的参与者根据任何计划定义的类别属于 UBR。我们的目标是 保持至少 75% 的活跃保留率，与 TPC 目前 86% 的活跃保留率一致。 借鉴自 2016 年以来 All of Us 的经验，包括招募超过 97,000 名员工 参与者以及超过 44,000 名参与者对生物样本采集的支持，我们将 改进我们为进一步实现该计划的使命而建立的流程和关系 实现个性化医疗保健。 TPC 将利用 All of Us 参与者实验室 (APL) 实施面向参与者的创新， 加速实现计划目标。采用精简的流程和专门的 创新基础设施来实施一系列高风险/高回报举措，我们将 管理创新渠道，同时最大限度地降低项目风险。数据驱动的决策将 在这个过程的每一步中，从为想法发展提供信息的文献综述到产生影响 衡量参与者反应的评估。会仔细考虑机会成本， 如果项目未能充分利用资源，就会被放弃。倡议的想法将是 向所有联盟利益相关者征集，并通过包括协调在内的流程进行选择 NIH 的目标和路线图以及 APL 重点领域的注册、参与、保留、 生物样本采集和研究数据采集。从 APL 计划开始，我们的目标是 将新颖的数据收集与多模态人工智能（AI）相结合，返回个性化 信息并改善参与者的健康。