A Community-Engaged Approach to Enhancing Participation in Genomic Research in Rare and Understudied Cancer...

Area of Science:

• Genomic research
• Community engagement
• Cancer research

Background:

• Limited studies explore incorporating community perspectives in early genomic research.
• Early and consistent engagement can mitigate participation barriers, especially for understudied cancer groups.

Purpose of the Study:

• To describe the process and impact of establishing a Participant Engagement Advisory Board (PEAB) for the Washington University Participant Engagement and Cancer Genome Sequencing (WU-PE-CGS) study.
• To highlight how community member input can enhance genomic research protocols.

Main Methods:

• Formed a PEAB with patients, advocates, and organizations representing cholangiocarcinoma, early-onset colorectal cancer in Black Americans, and multiple myeloma in Black Americans.
• Involved PEAB members from grant submission through monthly meetings and leadership roles.
• Documented PEAB recommendations on study procedures.

Main Results:

• PEAB provided critical feedback on recruitment scripts, consent forms, and survey design.
• Improvements included concise recruitment language, locale-specific tailoring, clearer expectations, prioritized consent information, data protection, genetic results clarification, refined scientific terms, and inclusivity.
• Feedback led to optimized recruitment, enhanced consent processes, and improved survey inclusivity.

Conclusions:

• PEAB feedback significantly improved the development and implementation of WU-CGS research processes.
• Incorporating PEAB suggestions facilitated successful enrollment of patients with rare and understudied cancers.
• The PEAB's ongoing contribution is vital throughout all study phases.