Power to participants: a call for person‐centred HIV prevention services and research

Abstract

IntroductionWhile biomedical HIV prevention offers promise for preventing new HIV infections, access to and uptake of these technologies remain unacceptably low in some settings. New models for delivery of HIV prevention are clearly needed. This commentary highlights the potential of person‐centred programming and research for increasing the cultural relevance, applicability and use of efficacious HIV prevention strategies. It calls for a shift in perspective within HIV prevention programmes and research, whereby people are recognized for their agency rather than assumed to be passive beneficiaries or research participants.DiscussionPerson‐centred HIV prevention reorientates power dynamics so that individuals (rather than interventions) are at the centre of the response. Respecting personal choice and agency – and understanding how these are shaped by the context in which people exercise these choices – are critical dimensions of the person‐centred approach. Community‐based participatory research should be employed to inform and evaluate person‐centred HIV prevention. We argue that community‐based participatory research is an orientation rather than a method, meaning that it can be integrated within a range of research methods including randomized controlled trials. But embracing community‐based participatory approaches in HIV prevention research requires a systemic shift in how this type of research is reported in high impact journals and in how research impact is conceived. Community‐based organizations have a critical role to play in both person‐centred HIV prevention and research.Conclusions HIV prevention is situated at the intersection of unprecedented opportunity and crisis. Person‐centred approaches to HIV prevention and research shift power dynamics, and have the potential to ensure a more sustainable response with each individual actively participating in their own care and meaningfully contributing to the production of knowledge on HIV prevention. This approach taps into the resourcefulness, resilience and knowledge of the person and their communities, to strengthen research and programmes, making them more relevant, appropriate and effective.

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“…While examining this in detail was not within the scope of the review, findings suggest a need for more accountability on this within academic publishing. For example, standard reporting guidelines on community engagement would allow for more transparency and clarity on whether and how this occurs in practice 82…”

It is not just about “the trial”: the critical role of effective engagement and participatory practices for moving the HIV research field forward

“…This problem of viewing engagement narrowly as a tool or mechanism for supporting clinical trials has deeper implications. Pantelic and colleagues argue that engagement should not be viewed as a method , but rather as an orientation that should be built into the interventions being designed and tested . They make the case for shifting the nature and orientation of HIV prevention research to be more aligned with the interests and needs of individuals and for addressing structural barriers to enhancing and integrating knowledge about community engagement in research through community‐based participatory and person‐centred research approaches.…”