1. The Role of Research in
Understanding HIV/AIDS in the
MENA Region
Jocelyn DeJong
Faculty of Health Sciences
American University of Beirut
Lebanon
Presentation at session on Research Needs in the
MENA Region, MENA networking zone, International
AIDS Conference, July 24, 2012

2. • 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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3. 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
3

4. 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
4

5. 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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6. 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

7. 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

8. 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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9. 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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10. 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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11. 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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12. 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
12

13. 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
13

14. 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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15. 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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