AIDS IMPACT 2009 Abstracts

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Abstract 1

Accepted for Oral Presentation in session 8.4 - Parallel: SocioPolitical challenge


The added value of community involvement in public health/HIV research: An abstract review of the concept


Despite the fact that experience shows community involvement to be an essential part of the response to combat the HIV epidemic, the added value of community involvement in public health and HIV research outcomes is still a matter for debate. Before assessing its’ added value, however, I first wanted to analyse how community involvement in HIV research is currently conceptualised, particularly in the post-ART context. A better understanding of this concept will thus identify the salient questions for future research.


On 27 March ‘09, I conducted an abstract search on PubMed Central for published peer-review journal articles after 1996 using the keywords ‘community research’ and ‘HIV’ simultaneously. The 67 studies thereby identified were then reviewed and categorised to understand how community involvement in research was conceptualised in these studies.


4 broad categories emerged. 54 studies fitted into category 1, where no definition of community involvement in research was provided. Of the remaining 13 studies, 4 fit into category 2, which referred only to passive involvement of the community, as in the community was only a subject in a predesigned research plan. The other 9 studies conceptualised community involvement as forms of participatory action research. 6 were grouped in category 3, where participants played an active role in designing the research with academics prior to the intervention. 2 cases fit into category 4, where community involvement was taken a step further in that participants also provided insight and/or recommendations to guide the research. 1 study overlapped both categories 3 and 4, but did not define one as being more valuable than the other. Of the 9 studies in categories 3 and 4, the added value of community involvement was found to be the empowerment of the community’s capacity, as well as an increased effectiveness of the research. No study presented any evidence of an improvement in outcomes for the science of public health, or in HIV prevention outcomes, as a result of the involvement of the community as partners in the design, implementation or translation of research.


While this concept review shows that there are perceived benefits of involving community in health and HIV research, the added-value to public health outcomes are poorly addressed. This review also suggests that community involvement in public health and HIV research has not yet led to any better or specific improvement in scientific knowledge as a tangible outcome. Hence, the concept needs to be clarified.

[Abstract 2 on Positive Leadership]