The Role of Research in Understanding HIV/AIDS in the

MENA Region

Jocelyn DeJongFaculty of Health Sciences

American University of BeirutLebanon

Presentation at session on Research Needs in the MENA Region, MENA networking zone, International

AIDS Conference, July 24, 2012

• Region lags behind other research in research capacity and available published research of high quality

• And much research is done that is not published in international, peer-reviewed journals with wide circulation

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Three aspects needed in HIV research in the region

• Multidisciplinary research• University-NGO collaboration• More explicit attention to research

ethics and risks/benefits to research participants

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1. Too much focus has been on general population, not those most

at risk• Yet in low prevalence settings need for

understanding dynamics of transmission among most-at-risk populations (MARPs)

• Strong stigma, social marginalization (importance, history of NGOs in reaching them)

• First bio-behavioral surveys of at-risk groups fairly recent

• Population size estimates of MARPs few• Negligible intervention research with MARPs

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2. Individual perspective dominates over social perspective

• Too many KAP (Knowledge, Attitude Practice) studies

• Seeing individuals divorced from social setting/context and social norms

• Limitations of individual behavioral change models

• Understanding culturally specific risk dynamics (e.g. tea-sellers Sudan)

• Understanding social context calls for multidisciplinary approaches and here NGOs have comparative advantage

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3. Lack of attention to ethical aspects

• Especially given the extensive stigma and social marginalization, any research on such populations has ethical implications yet ethical review often weak

• Particularly the case when payments made to research subjects

• Importance of understanding perceptions of research subjects (e.g. Why do they participate in studies? What risks and benefits?)

• Methodological approaches must be conditioned by what is ethical/minimizing risks to research subjects and maximizing potential benefits

• May be issue in university-NGO collaborations where NGOs uncomfortable with incentives 6

4. Perspective of those living with HIV often absent in

research• Involvement of people living with HIV in region is

low compared to other regions – now strong advocacy presence but less evident in research (exc. e.g. Morocco)

• Perspective critical to reach ‘unreached’, articulate limitations of response

• May be intermediaries with health services (particularly in context of low access to treatment)

• Associations for people with HIV now growing in strength and number yet little research on their role 7

5. Dominance of ‘etic’ vs ‘emic’ perspectives

• ‘Etic’ – how groups are labeled from the outside vs ‘emic’ how members of groups self-identify

• Importance of understanding people’s own notions of risk/membership in at-risk groups (e.g. MSM)

• Critical to do appropriate research but also for prevention

• Again, NGOs know populations better and points to importance of multidisciplinary research

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6. Lack of Policy Analysis

• Other regions have seen comparative policy studies comparing national responses to epidemic

• Little exploration of acceptability of existing policies/interventions

• E.g. research in Pakistan: analysis of stakeholder perceptions that explain low uptake of interventions

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7. Few studies on women and HIV

• Increasing attention (e.g. UNAIDS recent report)

• Difficult to reach risk groups and women living with HIV

• Little known re: dynamics of transmission/reasons for often late diagnosis and lower access treatment

• Lack of research exploring reproductive health/HIV linkages

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8. Insufficient analysis of existing data

• Existing data collection by NAPs across region – what can we learn?

• Emerging VCT data – what does it tell us?

• Importance of framing questions from a multidisciplinary perspective

• Universities can help NGOs to analyze their own data better

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9. HIV research often isolated from wider health system research

• Growing recognition that to be effective HIV programs must strengthen existing systems

• Yet often not the case: HIV programs separately funded/managed and Ministries of Health do not internalize HIV within overall functions

• Calls for greater multidisciplinary research to maximize linkages

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Yet there remain barriers

• Multidisciplinary research: difficult within universities; hierarchies of disciplines with social sciences often perceived as lower status; contextual research is time-consuming

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Other barriers

• University-NGO collaboration often challenging: different perspectives, institutional cultures, financial situation. NGOs focus on serving populations while researchers concerned with methodological rigor, reaching sample size…

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Conclusion

• Yet these barriers need to be overcome and examples show us that the benefit is great

• Imperative to increase the research base on a region often described as the question mark in international fora

• Critical that existing research currently as ‘grey literature’ gets into public domain and peer-reviewed journals for international circulation

• Most important: that research in the region benefits those trying actively to address the epidemic through prevention and treatment

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