Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study

Area of Science:

• Oncology
• Genomics
• Patient Engagement

Background:

• Patient and public engagement in research planning and conduct is increasingly valued.
• Identifying effective engagement strategies remains a challenge.

Purpose of the Study:

• Evaluate participation and participant experience with three engagement methods: research advisory council (RAC) meetings, Twitter, and Facebook.
• Assess engagement within the Low-Grade Glioma (LGG) Registry's Optimizing Engagement in Discovery of Molecular Evolution of Low-Grade Glioma (OPTIMUM) project.
• Part of the National Cancer Institute's Participant Engagement and Cancer Genome Sequencing Network.

Main Methods:

• Qualitative content analysis of discussions from RAC meetings, tweet chats, and Facebook discussions.
• Evaluation of participant experience through surveys (Public and Patient Engagement Evaluation Tool, Research Engagement Survey Tool, Trust in Medical Researchers Scale, Patient Engagement in Research Scale).
• Comparison of interaction types, recommendations for trust and participation across engagement methods.

Main Results:

• RAC engagements involved 25 unique participants; Twitter and Facebook had 197 and 133 participants, respectively.
• Qualitative analysis revealed differences in communication styles and information shared, but consensus on promoting genomic research participation.
• Post-engagement surveys indicated a more positive participant experience with RACs compared to social media.

Conclusions:

• Research advisory councils offer consistent interactions and clear procedures.
• Social media platforms provide broader reach but may yield less diverse perspectives.
• The LGG Registry will utilize both RACs and social media to foster diverse perspectives and consistent engagement.