Thareja Suma K, Yang Xin, Upama Paramita Basak, Abdullah Aziz, Torres Shary Pérez, Cocroft Linda Jackson, Bubolz Michael, McGaughey Kari, Lou Xuelin, Kamaraju Sailaja, Ahamed Sheikh Iqbal, Madiraju Praveen, Kwitek Anne E, Whittle Jeffrey, Franco Zeno
Medical College of Wisconsin, Milwaukee, WI 53226, United States.
All of Us Wisconsin, Milwaukee, WI 53226, United States.
J Am Med Inform Assoc. 2024 Dec 1;31(12):2940-2951. doi: 10.1093/jamia/ocae265.
The NIH All of Us Research Program aims to advance personalized medicine by not only linking patient records, surveys, and genomic data but also engaging with participants, particularly from groups traditionally underrepresented in biomedical research (UBR). This study details how the dialogue between scientists and community members, including many from communities of color, shaped local research priorities.
We recruited area quantitative, basic, and clinical scientists as well as community members from our Community and Participant Advisory Boards with a predetermined interest in All of Us research as members of a Special Interest Group (SIG). An expert community engagement scientist facilitated 6 SIG meetings over the year, explicitly fostering openness and flexibility during conversations. We qualitatively analyzed discussions using a social movement framework tailored for community-based participatory research (CBPR) mobilization.
The SIG evolved through CBPR stages of emergence, coalescence, momentum, and maintenance/integration. Researchers prioritized community needs above personal academic interests while community members kept discussions focused on tangible return of value to communities. One key outcome includes SIG-driven shifts in programmatic and research priorities of the All of Us Research Program in Southeastern Wisconsin. One major challenge was building equitable conversations that balanced scientific rigor and community understanding.
Our approach allowed for a rich dialogue to emerge. Points of connection and disconnection between community members and scientists offered important guidance for emerging areas of genomic inquiry.
Our study presents a robust foundation for future efforts to engage diverse communities in CBPR, particularly on healthcare concerns affecting UBR communities.
美国国立卫生研究院（NIH）的“我们所有人”研究计划旨在推动个性化医疗，不仅要将患者记录、调查和基因组数据相联系，还要与参与者互动，尤其是那些在生物医学研究中代表性不足的群体（UBR）。本研究详细阐述了科学家与社区成员（包括许多有色人种社区成员）之间的对话如何塑造了当地的研究重点。
我们招募了地区定量、基础和临床科学家以及来自社区和参与者咨询委员会的社区成员，他们对“我们所有人”研究有着预先确定的兴趣，作为特殊兴趣小组（SIG）的成员。一位专业的社区参与科学家在这一年中主持了6次SIG会议，在对话过程中明确倡导开放和灵活。我们使用为基于社区的参与性研究（CBPR）动员量身定制的社会运动框架对讨论进行了定性分析。
SIG经历了CBPR的出现、合并、发展和维持/整合阶段。研究人员将社区需求置于个人学术兴趣之上，而社区成员则使讨论聚焦于对社区切实的价值回报。一个关键成果是SIG推动了威斯康星州东南部“我们所有人”研究计划在项目和研究重点方面的转变。一个主要挑战是建立公平的对话，平衡科学严谨性和社区理解。
我们的方法促成了丰富的对话。社区成员与科学家之间的联系点和分歧点为基因组研究的新兴领域提供了重要指导。
我们的研究为未来让不同社区参与CBPR的努力奠定了坚实基础，特别是在影响UBR社区的医疗保健问题上。
