FORSS2 : Turning Community Data into a Lever for Improving Access to HIV Care in the MENA Region
Supported by L’Initiative, the FORSS2 programme extends and expands a network of community HIV observatories deployed since 2018 across the Middle East and North Africa (MENA) region. Led by Solidarité Sida and ITPC-MENA, with several implementing partners, it aims to document the barriers faced by people living with HIV and key populations in accessing testing, treatment, and care. Since its launch, more than 11,000 questionnaires have been collected across five countries, enabling analysis across seven dimensions of access to care and transforming field data into tools for dialogue, advocacy, and service improvement.
Hiba El Khamal, Executive Director of ITPC-MENA, and Marie-Charlotte Fargues, MENA Programme Manager at Solidarité Sida, reflect on the concrete results of the community observatories and on the challenges of sustaining the model in a context of shrinking international funding.
Why does FORSS2 rely on community HIV observatories in the MENA region?
Marie-Charlotte FARGUES: The community observatories were created because the realities of key populations were poorly documented — or not documented at all — in the MENA region. Without data, it is difficult to improve public policies, make them more inclusive, or adapt care within health facilities.
The observatories make it possible to document barriers to care across all their dimensions: geographical accessibility, financial accessibility, availability of services, adequacy to needs, acceptability, information — but also the environment in which people access services, including discrimination, stigma, and violence.
These are sometimes things we know empirically, but for which structured evidence is lacking. The observatories turn these realities into usable data.
Hiba EL KHAMAL: In many contexts, decision-makers are aware of certain problems, but they are not always documented robustly enough to compel action. When a civil society organisation arrives with data — with a proven methodology used across multiple countries — the conversation changes.
Community data becomes an argument. It allows civil society to come not only with an alert, but with a credible, documented basis for discussion that is oriented toward finding solutions.
What do these data capture that conventional systems tend to miss?
Marie-Charlotte FARGUES: National health information systems capture certain key indicators, but they are less effective at documenting lived experiences: the feeling of being discriminated against, fear of exposure, breaches of confidentiality, economic barriers, distance from services, or satisfaction with care.
In the FORSS model, data collectors and supervisors come from the communities themselves, or are deeply embedded in community realities. They are trained in data collection, active listening, confidentiality, and adherence to a strict ethical framework. This makes it possible to gather information that would otherwise remain invisible.
The goal is not to produce data for its own sake. The goal is to have a foundation for dialogue, advocacy, and concrete service improvement.
What concrete changes have the observatories made possible?
Marie-Charlotte FARGUES : In Tunisia, the observatory documented a highly stigmatising practice: the mandatory recording of HIV status in medical files. For people living with HIV, this raised a serious confidentiality concern. Some had stopped seeking care altogether, for fear that their status would be exposed. Using the collected data, the Tunisian Association for the Fight against STIs and AIDS — the implementing partner in Tunisia — conducted advocacy with the Ministry of Health. This led to a ministerial circular abolishing the mandatory disclosure requirement. It is an important step forward, even if work remains to be done to rebuild patient trust and shift practices on the ground.
In Lebanon, the observatories revealed significant mental health needs among people living with HIV and key populations. In a context of penalisation and criminalisation, some people did not know where to turn for support. Marsa, in partnership with the National AIDS Control Programme, therefore created a list of allied psychotherapists to whom people could be referred with confidence.
In Mauritania, observatory data contributed to the opening of new testing rooms, the introduction of free HIV testing at certain sites, and more broadly to the expansion of the prevention package — strengthening access to testing and better meeting the needs of populations.
Hiba EL KHAMAL : In Morocco, one of the major outcomes has been the institutional recognition of the model. The observatory has allowed civil society to come to the table with data, a methodology, and a constructive basis for dialogue with institutions. It is not only about pointing out what is not working — it is about proposing solutions grounded in data and documenting good practices.
The FORSS model is cited in the national AIDS programme’s recommendations as a successful experience to be integrated into the national health or institutional system. Observatory data are also used to map health centres across the country and to support centre certification based on patient satisfaction.
This institutional ownership is essential: the data do not remain solely at the community level. They are used by facility managers, the Ministry of Health, and the national AIDS programme to assess service quality, track the needs of users, and identify areas for improvement. The challenge today is to ensure the independence of community monitoring mechanisms.
ITPC-MENA and the National Harm Reduction Association of Morocco, the implementing partner in the country, have also been invited by the Ministry of Health to extend the observatory’s geographical coverage to the Souss-Massa region, one of the areas most affected by HIV in Morocco. The challenge now is to carry out this expansion with local resources, particularly within the framework of health service decentralisation.
How do these data change the dialogue with authorities?
Hiba EL KHAMAL : In our contexts, it is often difficult for civil society to position itself as a credible, serious actor capable of proposing solutions. The observatories change this. They allow organisations to come to the table with reliable data, methods, and approaches.
Civil society and community voices are then no longer seen solely as actors who denounce. They become producers of knowledge — capable of documenting barriers and contributing to the construction of responses.
We have, for example, used observatory data to conduct a study on the specific barriers women face in accessing services across the region. Among the findings, economic precarity stands out strongly: what does it mean, for a woman living in a village, to have to travel tens or even hundreds of kilometres to reach a health centre? This kind of reality may be known, but when it is substantiated by scientific data, it becomes much harder to ignore.
Marie-Charlotte FARGUES : For these data to be useful, trust must be built around them. Observatories must not be perceived as an audit or an indictment of health services. The goal is to work together to improve practices.
Before an observatory is launched, ministries are informed, a dialogue is initiated with health centres, and partnerships are established. Centres host the surveys and must in particular ensure conditions of confidentiality. This relationship of trust also allows facility managers to better understand their own patient population, the expectations of those they serve, and the constraints experienced along the care pathway.
Expanded steering committees are organised, bringing together authorities, representatives of key populations, facility managers, partners, and national Global Fund coordination bodies. These spaces allow data to be shared, ownership to be built, and recommendations to be co-constructed.
Accountability to communities is equally essential. The observatories are designed as mechanisms by and for communities, and results are fed back to them.
Why develop a toolkit from this experience?
Marie-Charlotte FARGUES : The toolkit is the product of a two-and-a-half-year knowledge-capitalisation process conducted with implementing partners. It responds to a simple question: how do you run a successful community observatory?
It covers the key implementation steps: establishing an ethics committee, developing contextualised questionnaires, training data collectors and supervisors, mobilising stakeholders, analysing data, disseminating findings, and modelling costs.
The goal is to make the model replicable by other organisations or institutions. Because FORSS is a multi-country programme, the toolkit also brings together the experiences of each country, showing that there is no single right way to do this — there are multiple possible approaches depending on context.
This dimension is already visible in exchanges with other community organisations, including in Haiti, Madagascar, Senegal, and Côte d’Ivoire, which are looking to the model to inform their own community monitoring approaches.
What matters is that this toolkit was built from a community HIV observatory operating in a region where contexts are often highly constrained. We are talking about key populations in countries where homosexuality, drug use, or sex work may be penalised or criminalised. This demands an exceptionally high level of methodological, ethical, and operational rigour.
If the approach works in contexts as challenging as these, it can inspire similar mechanisms in other regions or on other issues.
In a context of constrained funding, why sustain this model?
Hiba EL KHAMAL : In a context of constrained funding, the real question is not whether we can afford to sustain this model. It is whether we can afford not to. Community monitoring is not a peripheral activity. It is a tool for accountability, effectiveness, and health equity.
The MENA region is highly heterogeneous. Sustainability does not look the same from one country to the next.
In Lebanon, in the current context, it is extremely difficult. Organisations are constantly in survival mode, making any long-term work very challenging. In Tunisia, the context is also complex, but there is a basis on which to continue building institutional recognition of the programme.
In Morocco, the conditions are now in place to move toward deeper integration of the model into the institutional system. But the gradual withdrawal of the Global Fund creates urgency: community mechanisms must not become the first casualties of the transition. This requires innovation, greater decentralisation, the integration of relevant digital tools, and above all the preservation of community leadership.
In Mauritania, one promising avenue is the possible integration of the FORSS observatory into the national surveillance system, particularly through DHIS2. This could open up pathways toward sustainability, including through domestic financing. But we are still at a very early stage.
Marie-Charlotte FARGUES : In a context of shrinking funding, one might think that community observatories are not a priority. We are convinced of the opposite.
Precisely because resources are becoming scarcer, they need to be directed more effectively. Observatories make it possible to identify gaps, unmet needs, under-reached populations, and services that need to be adapted. They help channel funding more efficiently and avoid waste.
For us, community observatories are not a peripheral cost. They are tools for strategic steering — helping to align activities with real needs and maximise the impact of every available resource.
Hiba EL KHAMAL : The support of The Initiative matters because it does not only keep services running. It also enables civil society and community actors to lead innovative projects, test new approaches, and push the boundaries of what is comfortable — both for community organisations and for public authorities. In the current context, funding community-led innovation is more important than ever.
