1. Communities and research : the necessity for dialogue Bruno Spire President of AIDES Researcher at INSERM

2. Operations research

3. Operational research &community-based research Operational research : learning by doing Community research : doing research with people, not only for people   To use life experience of sero-concerned people a a source of inspiration for research project   To consider community driven interventions as part of a package of comprehensive care and prevention

4. The example of AIDES AIDES is a non-governmental association, including as its members sero-concerned people AIDES numbers 1000 volunteers, 450 staff members and has locations in 90 French cities AIDES’ objectives are:   to advocate improving health policies and for the rights of PLWHA   to experiment with innovative approaches in the field of prevention and support

5. Working with people, not for people Mobilization of communities HIV infected/affected Mobilization of communities HIV infected/affected  Alliance between HIV- and HIV+ (sero-concerned )  Non professionals have life-based expertise Community actions  Improved condom availability and use in gay venues  Peer-based needle exchange programs among IDUs  Mobilization of African immigrant women

6. Supporting PLWHAs Since 1996 : HIV infection has become a chronic disease thanks to antiretroviral therapy In the HAART era : support is aimed at assuring equity in access to care, fostering adherence and improving quality of life, including affective and sexual life Several research needs can be identified from working on the ground

7. Preventing therapeutic failure To promote salvage therapy trials To promote comprehensive care which includes adherence interventions Promoting interventions justified by either a theoretical health psychology framework or evidence-based empirical data

8. Randomised trials: an educational and counseling intervention for adherence vs Standard of care To evaluate the impact of an intervention for improving adherence and virological outcomes A prospective, controlled, randomized trial to assess the impact of an educational and counseling intervention against the standard of care was designed  PRADIER, HIV CLIN TRIALS 2003

9. Intervention n=123 Control n=121 p Average decrease of viral load % of patients with undetectable viral load at M6 -0.22 +0.12 0.002 p=0.01 NS 64% 54% 0.12 Sub group of patients with detectable VL at enrolment % of patients with undetectable viral load at M6 n=73 42%25%0.036  PRADIER, HIV CLIN TRIALS 2003

10. Beyond individual counseling Scaling-up of adherence intervention is limited AIDES has innovated peer-based interventions in groups which deserves to be properly evaluated by scientists   sharing individual representations on ARV   incorporate emotional support dimensions   collective management of living with HIV and ARV   improving quality of life

11. Why involve communities in care & research? ACCESS UNDERSTANDING EXPERIENCE TARGET OUTREACH

12. Why involving communities in prevention research? Stigma may contribute to HIV-related risk behaviors Fear of stigma is associated with less HIV test uptake and less willingness to disclose HIV+ results To understand how individuals and communities interpret the ‘‘risk’’ of HIV transmission  PULERWITZ, AIDS CARE 2008

15. Lessons learned by working with communities HIV - people do not want to get the virus HIV + people do not want to transmit the virus People who cannot consistently use condoms do care and try less effective strategies   Diaphragm in certain contexts   Negotiated safety   Sero-sorting among some PLWHA   Strategic positioning among HIV+ MSM   Condom use in case of STIs among barebackers  PARSONS, AIDS, 2005  LEOBON, AIDS CARE, 2008  KANG, AIDS BEHAV 2007  DOUGAN, STI, 2007  KIPPAX AIDS, 1997

16. Exploring community testing Moving HIV testing into community settings   Rapid testing performed by non health-care professionals to better reach marginalized populations   Could rapid testing enable repeat testing for those who are frequently exposed to risk ?

17. Conclusion Interaction with community groups should help scientists to better tailor research issues to real needs, including operational research Evidence-based advocacy is more efficient The battle against AIDS can be won if and only if scientists, field actors, community groups, and civil society are all mobilized.