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Communities and research : the necessity for dialogue

Communities and research : the necessity for dialogue. Bruno Spire President of AIDES Researcher at INSERM. Operations research . Operational research &community-based research. Operational research : learning by doing Community research : doing research with people, not only for people

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Communities and research : the necessity for dialogue

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  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 withinnovative approaches in the field of prevention and support

  5. Working with people, not for people • 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. p Intervention n=123 Control n=121 -0.22 +0.12 0.002 p=0.01NS 64%54%0.12 Average decrease of viral load % of patients with undetectable viral load at M6 Sub group of patients with detectable VL at enrolment % of patients with undetectable viral load at M6 n=73 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? TARGET OUTREACH ACCESS UNDERSTANDING EXPERIENCE

  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

  13. 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 • KANG, AIDS BEHAV 2007 • KIPPAX AIDS, 1997 • DOUGAN, STI, 2007 • PARSONS, AIDS, 2005 • LEOBON, AIDS CARE, 2008

  14. 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 ?

  15. 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.

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