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Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study.

Matthew DeCamp1,2, Juliana G Barnard3,4, Carly Ritger3

  • 1Center for Bioethics & Humanities, School of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, United States.

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|August 21, 2025
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Summary
This summary is machine-generated.

Patient and public engagement in cancer research is vital. Research advisory councils (RACs) and social media offer different benefits for engaging participants in genomic research, with RACs providing more positive experiences.

Keywords:
brain cancerbrain tumorengagementlow-grade gliomaresearch advisory councilsocial media

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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.