Emily Bass

Active engagement or missing in action: Community voices in HIV research. This session featured presentations on posters that tackled issues of what it means to engage 'stakeholders'--eg communities of people asked to participate in, support, validate, act on research results, in trials.

Emily Evens from FHI 360 (US) described a participatory, rights-based approach to research with marginalized groups who partnered in design, execution and validation of the project. Musonda Simwinga (Zambia) from the ZAMBART trial described use of adolescent community advisory boards (aCABs), Anthea Marian Lesch discussed the ways that researchers and CAB members view CAB functions differently--as a mode of study promotion on the part of the former, as a mechanism for social change on the part of the latter, and talked about how entrenched power imbalances provide the backdrop for research engagement. Suzanne Day (US) reviewed of publication on stakeholder engagement: there's more in higher income countries and at the start of trials. Gail Broder (US) talked about site-specific recruitment strategies; Graham Brown (Australia) discussed a participatory process for developing a PLHIV quality of life scale, winnowing down a wide range of categories to a concise, powerful tool.

This was a fascinating session with actionable, provocative findings in every talk. Both the speakers and the discussants positioned researcher in a broader context, noting that the term "subjects" has to be replaced by "participants" or "volunteers," and that the phrase "hard to reach" is positional and can be heard as reflecting a white supremecist vantage point. Day's presentation reflected the wide range of terms used to describe engagement--a terminological flexibility that can make it difficult to pin down what was done. Several presenters referenced the "Good Participatory Practice Guidelines" for biomedical HIV prevention research as a valuable framework.