Community engagement in biomedical research, new perspectives of collaboration with HIV prevention research Jean-Marie Le Gall AIDES & Coalition Plus IAS Thursday 26 July 2012

New context – New issues (1) Why did AIDES dive into biomedical research ? A past collaborative model in clinical research : community advisory board mainly for ethical aspects and to bring needs ands right of people living with HIV to the attention of researcher (for example TRT5 in France). We (community workers) are not physicians. We represent us as the “patients”. In HIV prevention research we are the « doctors » in some countries: because we have been supporting prevention in the community for 25 years and we are « expert » in interventions and in talking about community prevention needs.

New context – New issues (2) Why did AIDES dive into biomedical research ? Sometimes / frequently (?) prevention interventions were not evidence based but only community based. It was not a problem when the emergency was to give basic information, to distribute condoms or sterile needles - syringes Now issues of prevention are more complex in the context of combination prevention and we need research to produce evidence and to choose the best way for advocacy & intervention.

New context – New issues (3) Why did AIDES dive into biomedical research ? As Phill Wilson ( Black Aids Institute) said CBO- NGOs must change their intervention models and take an active part in new prevention issues not only distribute information and condoms but also HIV testing, Tasp, Prep, Microbicides (in the future), … New paradigm of prevention is not only in behavioral interventions but also in biomedical aspects: Communities must also be present in biomedical prevention !

Two recent experiences of community based biomedical research 1. Peer HIV testing in MSM community in ANRS Comtest & ANRS Drag Demonstration of feasibility for peer testing -Change in French public health law for HIV peer testing and implementation of non medical community based testing programs

Two recent experiences of community based biomedical research 2. Occasional Prep for MSM in the study ANRS IPERGAY -Preparatory phase : , community consultation in 30 big cities in France, national meeting, building protocol and research tools

Two recent experiences of community based biomedical research -We operate (since January 2012): community communication (gay venues, internet,..) Recruitment in risk reduction and peer HIV testing programs Support and counselling after inclusion in the study in collaboration with medical staff Proposal special counselling with motivational interview Focus group (behavioral and psychosocial data) and self support group for the participants

Lessons learned A deep involvement in biomedical research allows to participate in the co-building on research hypothesis in the first step of the project and we can fight for an holistic approach for prevention and not only epidemiologic results. We can promote specific aspects very important for the intervention implementation after the research. (We don’t do science only for science or scientific publication)

Lessons learned Our commitment in biomedical research change our place into the communities and in research process => 1.We develop a new empowerment on research methodology 2.We create a new partnership with the community of researchers 3.We change our partnership with the other CBOs. In the specific field of IPERGAY we are in the scientific steering committee of the study and we don’t participate in the CAB. But we stay in the field of advocacy for the access to Truvada and new prevention tools. Schizophrenic position ?

For learn more : Thank you for your attention !