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）保持使我们所有人都能进行全面研究的能力 计划（我们所有人）在美国（US）的参与和2）在 支持计划目标的参与者经验。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在美国。 参与我们所有人。TPC将通过多种方法接触到个人所在的地方 从轻度接触的数字外展到高度接触的面对面一对一支持。TPC战略和 策略旨在支持招募超过20万名新的基线参与者，同时维护 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， 在生物医学研究（UBR）中，基于种族和/或 种族，80%的参与者是基于任何程序定义的类别的UBR。我们的目标是 保持至少75%的活性保留率，与TPC目前86%的活性留存率保持一致。 自2016年以来，我们在All of Us的经验，包括招聘超过97，000人 参与者和支持超过44，000名参与者收集生物标本，我们将 改进我们已经建立的流程和关系，以进一步推进该计划的使命， 实现个性化的医疗保健。 TPC将利用All of Us Participant Labs（APL）来实施面向参与者的创新， 加快实现计划目标。采用精简的流程和专门的 创新基础设施，以推行一系列高风险/高回报的措施，我们会 管理创新管道，同时最大限度地降低项目风险。数据驱动的决策将是 在这个过程的每一步，从文献综述通知想法发展的影响， 评估参与者的反应。机会成本将被仔细考虑， 如果这些项目没有达到最佳的资源利用率，就会被放弃。创意将是 从所有联合体利益相关者中征求意见，并通过包括协调在内的流程进行选择 与NIH的目标和路线图和APL的重点领域的招生，参与，保留， 生物标本收集和研究数据收集。从APL计划开始，我们的目标是 联合收割机将新颖的数据收集与多模态人工智能（AI）相结合， 信息和改善参与者健康。