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.