Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network
Year: 2023
Type: article
Abstract: BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. IMPACT: Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement.
Authors: Anne LR. Schuster, Norah L. Crossnohere, Melinda Bachini, Cindy K. Blair, John D. Carpten, Elizabeth B. Claus, Graham A. Colditz, Li Ding, Bettina F. Drake, Ryan C. Fields, Katherine A. Janeway, Bethany M. Kwan, Heinz-Josef Lenz, Qin Ma, Shiraz I. Mishra, Electra D. Paskett, Timothy R. Rebbeck, Charité Ricker, Mariana C. Stern, Andrew L. Sussman, Jessica C. Tiner, Jeffrey M. Trent, Roel GW. Verhaak, Nikhil Wagle, Cheryl Willman, John FP. Bridges, for the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network
Institutions: The Ohio State University, Cholangiocarcinoma Foundation, University of New Mexico, UNM Comprehensive Cancer Center, University of New Mexico Health Sciences Center, University of Southern California, USC Norris Comprehensive Cancer Center, Brigham and Women's Hospital, Yale University, Washington University in St. Louis, Alvin J. Siteman Cancer Center, Broad Institute, Harvard University, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Massachusetts Institute of Technology, University of Colorado Anschutz, Dana-Farber Cancer Institute, National Institutes of Health, National Cancer Institute, Center for Cancer Research, Translational Genomics Research Institute, The Jackson Laboratory for Genomic Medicine, Dana-Farber/Harvard Cancer Center, Mayo Clinic, Mayo Clinic Comprehensive Cancer Center (Minnesota)
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Awards: G1044130170, G1815068494, G2345298772, G3328998100, G3381471543, G5205492941, G772794905, G7905903997, Count Me In: Partnering with patients to define the clinical and genomic landscape of rare aggressive sarcomas in children and adults, Washington University Participant Engagement and Cancer Genomic Sequencing Center (WU-PE-CGS), USC PE-GCS: Optimizing Engagement of Hispanic Colorectal Cancer Patients in Cancer Genomic Characterization Studies
OpenAlex ID: W4320892436