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Global hepatitis B and D community advisory board: expectations, challenges, and lessons learned
Fiona Borondy-Jenkins1, Bright Ansah1, Jacki Chen1
1Hepatitis B Foundation, Doylestown, PA, United States.
Frontiers in Public Health
|September 10, 2024
Summary
Establishing a global Community Advisory Board (CAB) for hepatitis B and hepatitis delta is valuable. Participation offers advocacy and knowledge gains, despite challenges like stigma, highlighting the need for regular CAB reviews.
Area of Science:
- Public Health
- Patient Advocacy
- Infectious Diseases
Background:
- Community Advisory Boards (CABs) are crucial for patient-centered care.
- The global impact of CAB participation on members remains understudied.
- The Hepatitis B Foundation (HBF) formed the first global hepatitis B and hepatitis delta CAB in 2022.
Purpose of the Study:
- To evaluate the process of forming an effective global CAB.
- To assess the impact of CAB membership on participants.
- To identify motivations, challenges, and suggestions for CAB members.
Main Methods:
- Conducted three virtual focus groups with 16 CAB members.
- Utilized grounded theory and qualitative analysis of transcribed sessions.
- Employed independent primary and secondary coding for thematic identification.
Main Results:
- Key motivations included advocacy and altruism.
- Membership provided networking, advocacy opportunities, and enhanced knowledge.
- Challenges involved time, physical limitations, and stigma; improved engagement with drug developers was suggested.
Conclusions:
- Global CABs for stigmatized infectious diseases are beneficial and worthwhile.
- Continuous internal review of CAB structure and performance is essential for mission fulfillment.
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