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. 2023 Apr 3;32(4):487-495.
doi: 10.1158/1055-9965.EPI-22-0356.

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network

Anne Lr Schuster  1 , Norah L Crossnohere  2 , Melinda Bachini  3 , Cindy K Blair  4 , John D Carpten  5 , Elizabeth B Claus  6   7 , Graham A Colditz  8 , Li Ding  9 , Bettina F Drake  10 , Ryan C Fields  11 , Katherine A Janeway  12 , Bethany M Kwan  13 , Heinz-Josef Lenz  14 , Qin Ma  1 , Shiraz I Mishra  15 , Electra D Paskett  16 , Timothy R Rebbeck  17 , Charité Ricker  18 , Mariana C Stern  19 , Andrew L Sussman  20 , Jessica C Tiner  21 , Jeffrey M Trent  22 , Roel Gw Verhaak  23 , Nikhil Wagle  24 , Cheryl Willman  25   26 , John Fp Bridges  1 ; Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network
Affiliations

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network

Anne Lr Schuster et al. Cancer Epidemiol Biomarkers Prev. .

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.

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Figures

Figure 1. The four-phase process to identify Network priorities. Figure 1 depicts the stages of the process used to identify Network priorities.
Figure 1.
The four-phase process to identify Network priorities. Depicts the stages of the process used to identify Network priorities.
Figure 2. Example of online platform for real-time brainstorming and voting. Figure 2 contains a modified display of comments and voting on online platform (https://reetro.io).
Figure 2.
Example of online platform for real-time brainstorming and voting. Contains a modified display of comments and voting on online platform (https://reetro.io).
See this image and copyright information in PMC

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