Engaging Diverse Stakeholders in Genomic/Precision Medicine Research: The All of Us Research Program Engagement Core

让不同的利益相关者参与基因组/精准医学研究：我们所有人研究计划的参与核心

• 批准号: 10789515
• 负责人: CONSUELO HOPKINS WILKINS
• 金额: $ 207.61万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 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 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10789515
• 关键词: All of Us Research Program; Area; Child; Childhood; Communities; Data; Enrollment; Evaluation; Exclusion; Feedback; Future; Genomics; Infrastructure; Mental Health; Minority; Minority Groups; Parents; Participant; Personal Satisfaction; Phase; Research; Research Personnel; Resources; Role; Science; Seminal; Surveys; Time; Voice; Work; aged; data access; design; evidence based guidelines; interest; marginalized population; member; patient engagement; precision medicine; programs; recruit; tool; young adult; All of Us Research Program; Area; Child; Childhood; Communities; Data; Enrollment; Evaluation; Exclusion; Feedback; Future; Genomics; Infrastructure; Mental Health; Minority; Minority Groups; Parents; Participant; Personal Satisfaction; Phase; Research; Research Personnel; Resources; Role; Science; Seminal; Surveys; Time; Voice; Work; aged; data access; design; evidence based guidelines; interest; marginalized population; member; patient engagement; precision medicine; programs; recruit; tool; young adult

In this Research Opportunity Announcement for Area of Interest 4, we describe the seminal work of establishing an infrastructure that operationalizes engagement of diverse research participants, distinct from recruitment/enrollment, and building on the foundational work of integrating research participants within the governance of research programs. Our approach and best practices are embedded into the Engagement Core’s five aims 1)Serve as the central hub for participant engagement – providing resources, expertise, and tools – to the All of Us Consortium for engaging participants as partners in the governance, priority setting, implementation, and evaluation of All of Us; 2) Effectively integrate participants, who reflect the broad diversity of All of Us, as partners in the governance, oversight, and evaluation of All of Us; 3) Capture and integrate the voices of diverse participants to enhance the design, implementation, and use of All of Us data, resources, and results; 4) Continuously assess the impact of participant engagement on all aspects and phases of All of Us including governance, design, implementation, and evaluation; and 5) Advance the science of engagement with an emphasis on engaging historically marginalized and minoritized groups. To date, our Engagement Core has established the infrastructure for participant engagement, by successfully integrating 81 participants (including 58 [72%] from minoritized and historically excluded communities into various All of Us governance roles including 12 members on the steering committee and 6 on the executive committee. Our Engagement Core has responded to 55 requests for engagement reflecting a range of activities including review of a mental health and well-being PPI survey and generating potential solutions to safely extend data access to non-traditional researchers in the All of Us Researcher Workbench. In the next phase, we will continue the multi-faceted strategies above and will expand our approaches to include voices currently missing from existing engagement such as young adults, and parents of children aged 18 and younger (critical given upcoming pediatric enrollment). We will also create new mechanisms such as a rapid feedback panels - a diverse group of participants who will provide time-sensitive feedback in critical areas. Ultimately, we will document successful strategies to contribute evidence-based recommendations for future large-scale studies with a substantial participant engagement component.

在有关感兴趣领域4的研究机会公告中，我们描述了建立基础设施的第二项基础设施，该基础设施运营基础设施，该基础设施运营了潜水员研究参与的基础设施，这与招聘/入学率不同，并基于将研究参与整合在研究计划中的基础工作。我们的方法和最佳实践嵌入了参与核心的五个目标中1）作为参与参与的中心枢纽 - 提供资源，专业知识和工具 - 向我们所有人的财团提供参与参与者作为治理，优先设置，实施和评估我们所有人的合作伙伴的联盟； 2）有效地整合参与者，他们作为我们所有人的治理，监督和评估的合作伙伴，反映了我们所有人的广泛多样性； 3）捕获并整合了多样性参与者的声音，以增强我们所有数据，资源和结果的设计，实施和使用； 4）不断评估参与者参与对我们所有人的各个方面和阶段的影响，包括治理，设计，实施和评估； 5）进步参与科学，重点是与历史上的边缘化和少数化群体参与。迄今为止，我们的参与核心已通过成功整合81名参与者（包括58 [72％]（包括58 [72％）（包括58 [72％）（72％），且历史上被排除在少数化和历史上的社区中，包括指导委员会的12名成员，包括12名成员，包括6名在执行委员会上，包括我们的互动范围。将数据访问扩展到我们所有人在下阶段的非传统研究人员中，我们将继续上面的多方面策略，并将我们的方法扩展到包括现有的年轻人中缺少的声音，例如年轻人的父母，以及年龄在18岁及以下的年龄段的孩子（同时赋予了一个重要的人）。关键领域的时间敏感反馈。最终，我们将记录成功的策略，为未来的大规模研究提供基于证据的建议，并具有大量的参与参与部分。