Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, Ohio.
Division of General Internal Medicine, Department of Internal Medicine, The Ohio State University, Columbus, Ohio.
Cancer Epidemiol Biomarkers Prev. 2023 Apr 3;32(4):487-495. doi: 10.1158/1055-9965.EPI-22-0356.
Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial interaction between study participants and researchers. PE-CGS sought to set priorities in participant engagement for conducting the network's research.
PE-CGS deliberatively engaged its stakeholders in the following four-phase process to set the network's research priorities in participant engagement: (i) a brainstorming exercise to elicit potential priorities; (ii) a 2-day virtual meeting to discuss priorities; (iii) recommendations from the PE-CGS External Advisory Panel to refine priorities; and (iv) a virtual meeting to set priorities.
Nearly 150 PE-CGS stakeholders engaged in the process. Five priorities were set: (i) tailor education and communication materials for participants throughout the research process; (ii) identify measures of participant engagement; (iii) identify optimal participant engagement strategies; (iv) understand cancer disparities in the context of cancer genomics research; and (v) personalize the return of genomics findings to participants.
PE-CGS is pursuing these priorities to meaningfully engage diverse and underrepresented patients with cancer and posttreatment cancer survivors as participants in cancer genomics research and, subsequently, generate new discoveries.
Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement.
让不同人群参与癌症基因组学研究至关重要，这也是 NCI 参与者参与和癌症基因组测序 (PE-CGS) 网络的基本目标。作为癌症登月计划的一部分，PE-CGS 是一个由利益相关者组成的联盟，包括临床医生、科学家、遗传咨询师，以及潜在研究参与者及其社区的代表。参与者参与是研究参与者和研究人员之间持续、双向和互利的互动。PE-CGS 试图在参与者参与方面确定优先事项，以开展网络的研究。
PE-CGS 通过以下四个阶段的精心策划过程来确定网络在参与者参与方面的研究优先事项：（i）头脑风暴练习以引出潜在的优先事项；（ii）为期两天的虚拟会议以讨论优先事项；（iii）PE-CGS 外部顾问小组的建议以完善优先事项；以及（iv）虚拟会议以确定优先事项。
近 150 名 PE-CGS 利益相关者参与了该过程。确定了五个优先事项：（i）在整个研究过程中为参与者量身定制教育和沟通材料；（ii）确定参与者参与度的衡量标准；（iii）确定最佳的参与者参与策略；（iv）了解癌症基因组学研究中癌症差异的情况；以及（v）将基因组学发现个性化回馈给参与者。
PE-CGS 正在努力推进这些优先事项，以有意义地让不同和代表性不足的癌症患者和治疗后癌症幸存者作为参与者参与癌症基因组学研究，并随后产生新的发现。
PE-CGS 将按照参与者知情同意和社区协议的方式，与更广泛的科学界分享数据。
