DISP-04. EXPLORING ENGAGEMENT IN LOW GRADE GLIOMA GENOMIC RESEARCH: A COMPARATIVE ANALYSIS OF THREE APPROACHES

Abstract

Abstract BACKGROUND Engaging patients and care partners in research planning and conduct improves equity and patient-centeredness of research. Determining the most effective engagement methods remains challenging. This study evaluated participation and experience using three engagement methods with the Low Grade Glioma (LGG) Registry’s OPTIMUM project, part of the Participant Engagement in Cancer Genome Sequencing (PE-CGS) Network. METHODS We evaluated participation and experience among participants in LGG Registry Research Advisory Council (RAC) meetings, Twitter (“tweet chats”), and Facebook discussions across four engagement activities. Participants completed validated engagement experience surveys, including the Public & Patient Engagement Evaluation Tool (PPEET), Research Engagement Survey Tool (REST), Patient Engagement in Research Scale (PEIRS-22), and the Trust in Medical Researchers scale. Researchers recorded discussions and performed qualitative analyses across groups. RESULTS RAC engagements involved 25 unique participants representing diverse backgrounds, while tweet chats and Facebook discussions had 197 and 133 participants, respectively. Post-engagement surveys (n = 52 post-engagement 1; n = 40 post-engagement 4) showed no statistically significant differences between engagement approaches in the overall meaningfulness of engagement on PEIRS-22 or REST scales, nor were there differences in post-engagement 1 trust. RAC members rated PEIRS-22 procedural requirements more positively and reported recalling a wide range of expressed views more than social media participants. Conversely, RAC members gave less positive ratings on PPEET items related to feeling heard. Qualitative findings highlighted differences in the nature of interactions across groups, but agreement around trust and similar recommendations for promoting participation in genomic research across engagement methods.