Approaches to engaging participants in a national cancer genomics research network.
Authors: Crossnohere Norah L. , Schuster Anne L.R. , Mishra Shiraz I , Kwan Bethany ,   Participant Engagement Subcommittee of the Participant Engagement in Cancer Genomic Sequencing (PE-CGS) Network
Published: June 2024

11022

Background: Although patient engagement is thought to improve the relevance and acceptability of research across diverse patient populations, a paucity of studies actively evaluate engagement activities to assess their impact. The NCI’s Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network was established to advance cancer genomics for understudied cancers and among underserved populations by engaging patients and survivors as participants in research. We sought to characterize strategies for engaging and evaluating engagement among research centers within PE-CGS, and to describe factors impacting each center’s unique engagement strategies and evaluation methods. Methods: We used a multi-method approach to document centers’ engagement strategies and methods to evaluate engagement.We first completed a document review of centers’ study materials including protocols, specific aims, and publicly available information. We then conducted semi-structured key informant interviews with research center members to validate findings from the document review and to identify factors that influenced engagement strategies. The semi-structured interview guide was developed using the Health Equity Implementation Framework to ensure that we accounted for multi-level factors (societal, contextual, and clinical factors) relevant to engagement. Engagement strategies and evaluation methods were collated and analyzed descriptively. Information about factors that influenced their engagement strategies were analyzed using deductive thematic analysis. Results: Across the five PE-CGS research centers, we identified 9 engagement strategies including: convening at network meetings (n=5), use of advisory boards (n=5), brochures (n=3), newsletters (n=2), community outreach through advocacy organizations (n=1) and in-person events (n=2), and use of branded websites (n=4), social media (n=3), and health technology apps (n=1). Methods used for evaluating engagement included: surveys (n=4), interviews/focus groups (n=4), informal feedback from participants (n=2), randomized experiments (n=1), and N-of-1 studies (n=1). Multi-level factors that influenced engagement included those related to the language and culture of the patient population, availability of validated measures, timing of interactions with participants within their health journey, and patient burden imposed by the experienced cancer. Conclusions: Across a national research network with a priority to advance participant engagement in cancer genomics research, we observed a range of unique engagement strategies and evaluation methods. Notably evaluation approaches were not typically tied to specific engagement strategies, but rather sought to evaluate broader aspects of engagement in the respective research studies, such as their ability to engender inclusivity, collaboration, and trust among participants.