The Other Side of Nowhere Jazz Improvisation and Communities in Dialogue
Communities and research : the necessity for dialogue
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Transcript of Communities and research : the necessity for dialogue
Communities and research : the necessity for dialogue
Bruno SpirePresident 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
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
The example of AIDESThe 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
Working with people, not for people Mobilization of communities HIV Mobilization of communities HIV
infected/affectedinfected/affected Alliance between HIV- and HIV+ (sero-concerned )Alliance between HIV- and HIV+ (sero-concerned ) Non professionals have life-based expertiseNon 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
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
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
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
Interventionn=123
Controln=121
p
Average decrease of viral load
% of patients withundetectable viral load at M6
-0.22 +0.12 0.002p=0.01 NS
64% 54% 0.12
Sub group of patients with detectable VL at enrolment
% of patients withundetectable viral load at M6
n=73 n=73
42% 25% 0.036PRADIER, HIV CLIN TRIALS 2003
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
Why involve communities in care & research?
ACCESS
UNDERSTANDINGEXPERIENCE
TARGET OUTREACH
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
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
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 ?
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.