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Optimizing participant and community engagement in cancer genomic sequencing research.

Norah L Crossnohere·Anne L R Schuster·Cindy K Blair·Hasani Bland·John D Carpten·Elizabeth B Claus·Graham A Colditz·Diane Diehl·Li Ding·Bettina F Drake·Ryan C Fields·Suzanne George·Katherine Janeway·Hyoshin Kim·Heinz-Josef Lenz·Jennifer W Mack·Charité Ricker·Mariana C Stern·Andrew Sussman·Jeffrey Trent·Eliezer Van Allen·Roel Verhaak·Cheryl Willman·John F P Bridges·Shiraz I Mishra·Bethany M Kwan·PE-CGS Network
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Abstract

PURPOSE: We describe strategies implemented across research centers of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network to optimize engagement of participants and communities in cancer genomics research. We also present consensus definitions of engagement and engagement optimization, informed by our shared experiences in the Network. METHODS: Key informant interviews and a document review identified engagement and optimization strategies across PE-CGS research centers. Findings were synthesized using qualitative content analysis. Consensus on definitions of engagement and optimization were developed through iterative review by PE-CGS members. RESULTS: PE-CGS research centers adopted tailored strategies based on community needs and scientific gaps. Engagement strategies included community-based efforts (eg, advisory boards and newsletters) and participant-focused approaches (eg, enhanced informed consent and decision support tools). Optimization strategies leveraged scientific methods (eg, randomized controlled trials and surveys) to evaluate engagement. Engagement was described as the sustained and meaningful interactions between researchers, participants, and communities. Optimization was described as the application of scientific methods to refine and improve engagement and research processes and outcomes. CONCLUSION: Engagement and optimization strategies have informed research planning, conduct, and dissemination across PE-CGS. These approaches and definitions provide a foundation for developing evidence-based practices to strengthen participant and community involvement in cancer genomics research.

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HumansNeoplasmsGenomicsCommunity ParticipationInformed ConsentCancer MoonshotEngagementGeneticsMedical OncologyPatient ParticipationJournal ArticleResearch Support, N.I.H., Extramural

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Norah L Crossnohere, Anne L R Schuster, Cindy K Blair, Hasani Bland, John D Carpten, Elizabeth B Claus, Graham A Colditz, Diane Diehl, Li Ding, Bettina F Drake, Ryan C Fields, Suzanne George, Katherine Janeway, Hyoshin Kim, Heinz-Josef Lenz, Jennifer W Mack, Charité Ricker, Mariana C Stern, Andrew Sussman, Jeffrey Trent, Eliezer Van Allen, Roel Verhaak, Cheryl Willman, John F P Bridges, Shiraz I Mishra, Bethany M Kwan, PE-CGS Network. 2025-06-11. Optimizing participant and community engagement in cancer genomic sequencing research.. https://doi.org/10.1016/j.gim.2025.101483

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