Beyond community engagement: perspectives on the meaningful involvement of people with HIV and affected communities (MIPA) in HIV cure research in The Netherlands

Abstract

Background Meaningful involvement of people with HIV and affected communities in HIV cure research is essential to ensuring that cure research efforts are conducted transparently, socially justly, and ethically. This study set out to investigate how people with HIV and affected communities are involved in cure research in the Netherlands and explore what can be done to optimize involvement and engagement. Methods Eighty-five semi-structured online, telephone, and face-to-face interviews were conducted with people with HIV (N = 30), key populations (N = 35), and key informants (KI; N = 20) in the field of HIV. The interviews were analyzed using reflexive thematic analysis. Results Awareness of the meaningful involvement of people with HIV (MIPA) efforts was low among people with HIV and key populations, which contrasted with KI, who exhibited greater awareness. People with HIV and KI emphasized the importance of MIPA in ensuring the representation of lived experiences in HIV cure research and fostering trust between communities and researchers. Practical implementations of MIPA were unclear, ultimately resulting in difficulties defining MIPA beyond clinical trial participation. People with HIV and key populations also doubted their skills and self-efficacy to make meaningful contributions when confronted with involvement beyond participating in research and clinical trials. Conclusions MIPA is crucial for improving the quality, transparency, and ethical conduct of HIV cure research. It emphasizes the need for increased awareness and funding, standardized guidelines to ensure meaningful involvement, and combat tokenism and misconceptions.