Theme: Clinical Research Year: 2024
Background: South Africa lacked a structured platform for people who inject drugs (PWID) to participate in biomedical research processes. In October 2023 a community advisory board (CAB) was set up for research into long-acting depot buprenorphine (LADB) and low dead space needles/syringes (LDSS) in Johannesburg. The South African Network of People who Use Drugs provides secretariate support. We aimed to describe the process, functioning and member experiences five months after inception.
Methods: Data was drawn from CAB documentation and reflections from the secretariate. At the third CAB meeting (February 2024) members were asked to reflect on what being on the CAB meant for them. Data was consolidated into a spreadsheet and analysed thematically. Findings were shared with CAB members for validation.
Results: Sixteen people with experience of drug use and community-led advocacy, services and/or research applied for CAB membership using an online form. At least one local and one international expert reviewed applications. 10 members (6 women) representing a balance of perspectives were appointed in October 2023. Attendance across meetings has been 90-100%. Members have discussed concerns raised by the local ethics committee around participant safety and confidentiality. Consensus positions were reached, and mitigation strategies developed. Relevant changes were made to the protocols, which were accepted by the ethics committee. Limited access to transportation, bank accounts, data, email addresses and smart phones have hampered CAB functioning. CAB members viewed participation as an opportunity for learning, empowerment, and networking. Themes associated with membership included responsibility, altruism, and pride. One member reflected that “before [the CAB] rules, meetings and solutions were done without us.”
Conclusion: Despite the challenges, the CAB has provided insights into the planning of LADB and LDSS research in South Africa. The process has benefited members and is expected to improve the quality and relevance of the planned research.
Disclosure of Interest Statement: AS has received honoraria from Gilead and Abbott to participate in speaking engagements.