Engaging the Community with Hepatitis C Research.
Viral hepatitis, a major global health problem, is a potentially life-threatening liver infection caused by the hepatitis viruses (A, B, C, D, and E). Infections have serious consequences for patients, their families and other contacts. Vietnam is one country where hepatitis infection rates remain high.
Oxford University Clinical Research Unit (OUCRU) is collaborating with the Hospital for Tropical Diseases HCMC (HTD) to conduct clinical studies with patients with hepatitis C (Hep C) . We have established a patient community advisory board (CAB) to engage with the Hep C community, to gather feedback on screening procedures and proposed clinical trials, and to enable us to understand more about patient’s experiences of living with Hep C in Vietnam.
Linking doctors, researchers and the wider hepatitis patient community in order to:
• Help researchers design strategies that enable effective and fair recruitment of patients into clinical trials.
• Give input into the development of an appropriate questionnaire for screening patients, study information sheets and informed consent forms.
• Advise on effective and appropriate dissemination of research findings within the patient community, and to the wider public.
• Gain better understanding of patients’ experiences of living with Hep C, and to facilitate the sharing of experiences and concerns.
What we do
- In 2017 OUCRU and HTD established a Hep C CAB including representatives of patients (newly diagnosed and long-term) and family members.
- A CAB coordinator, facilitator and 1-2 other research professional staff attend each meeting.
- The CAB meets 3-4 times a year.
- Discussions within the CAB may include an introduction from a doctor or researcher, feedback about how to phrase questionnaires, seeking suggestions for developing counselling or educational material, researcher’s responses to CAB requests or open sharing by a CAB member/guest on topics of common interest.
Summary of CABs in Health Research
A community advisory board (CAB) is a type of advisory board consisting of representatives of the general public who meet with representatives of an institution to relay information between the two groups. They may be established for research with a particular target group (e.g. adolescents) or for the purpose of particular studies (e.g. TB vaccine studies) or for research more generally. Variations of CABs include Community Advisory Groups (CAGs) and Young People’s Advisory Groups (YPAGs).