Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: Nov 15, 2024
Date Accepted: May 22, 2025
A Multi-Method Comparative Study of Engagement Methods in Brain Tumor Genomic Research
ABSTRACT
Background:
Engaging patients, care partners, and others in research planning and conduct is increasingly valued. Determining the most effective methods remains challenging.
Objective:
This study evaluated participation and participant experience using three engagement methods with the Low-Grade Glioma (LGG) Registry’s OPTIMUM project, part of the National Cancer Institute’s Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.
Methods:
We evaluated LGG Registry Research Advisory Council (RAC) meetings, Twitter, and Facebook discussions across four engagements with each group. Researchers recorded discussions and performed qualitative content analysis to evaluate differences in the nature of interactions and recommendations for promoting trust and participation in LGG Registry research. Participants completed experience surveys after engagements 1 and 4 (Public & Patient Engagement Evaluation Tool (PPEET), Research Engagement Survey Tool (REST), Trust in Medical Researchers scale, Patient Engagement in Research Scale (PEIRS-22)).
Results:
RAC engagements involved 25 unique participants representing diverse backgrounds; tweet chats and Facebook discussions had 197 and 133 participants, respectively. Qualitative findings highlighted differences in the nature of interactions (e.g., communication styles, types of information shared) across groups, but agreement around recommendations for promoting participation in genomic research. Post-engagement surveys (n=52 post-engagement 1; n=40 post-engagement 4) showed patterns suggesting a more positive experience overall for the RAC.
Conclusions:
Advisory councils and social media engagement methods have advantages and disadvantages. Advisory councils provide consistent engagement with the same individuals and clear procedures. Despite theoretically broader reach, social media engagement may yield less diverse perspectives. The Registry aims to use RAC and social media engagement to promote diverse perspectives and maintain consistent engagement.
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