For years, the HIV response has largely been assessed through quantitative indicators: coverage rates, numbers of people on treatment, and levels of viral suppression. These indicators are essential and reflect genuine progress, particularly in sub-Saharan Africa, where access to antiretroviral treatment has expanded significantly. However, they provide limited insight into how HIV services are actually experienced by the people who rely on them.

In practice, another reality persists. HIV services may formally exist, yet remain difficult to access. Care pathways may be officially open while still being complex, fragmented, or discouraging. Policies may be ambitious, but their impact is often weakened by barriers that are invisible in routine monitoring systems. These gaps between service provision and lived experience highlight a structural weakness: the quality of the HIV response depends not only on coverage but also on the capacity of health systems to listen, adapt, and be accountable.

This is where community-led monitoring becomes critical. Far from being a marginal innovation, it represents an underused lever to improve the quality, equity, and sustainability of HIV responses, both in Africa and in the Middle East and North Africa (MENA) region.

Community-Led Monitoring: Understanding Services from the Ground

Community-led monitoring is based on a straightforward principle: people who use HIV services are often best placed to identify their shortcomings. Long waiting times, breaches of confidentiality, stigmatizing attitudes, inconvenient opening hours, or interruptions in treatment are part of the everyday experience of many people living with or affected by HIV. Yet these realities frequently escape conventional monitoring and evaluation mechanisms.

Unlike broad notions of community participation, community-led monitoring is not about delivering services or relaying prevention messages. It is a distinct accountability function: systematically observing, documenting, and analyzing how HIV services operate, and producing structured feedback that can inform decision-making. When recognized and supported, this function introduces a qualitative, experience-based perspective into health systems.

In many African and MENA countries, this distinction remains insufficiently understood. Community organizations are widely mobilized for service delivery but rarely acknowledged as legitimate actors of accountability. This ambiguity limits the scope of community-led monitoring and weakens its potential to improve service quality.

Accountability in the HIV response: A Persistent Blind Spot

HIV programs have invested heavily in monitoring and evaluation systems. These systems generate regular and standardized data that are essential for program management and donor reporting. However, they remain largely upward-oriented, designed to inform funders and central authorities rather than service users.

As a result, discrepancies between standards and actual practice are often overlooked. Experiences such as disrespectful treatment in health facilities, fear of disclosure, or disengagement from care due to lack of trust are difficult to capture through quantitative indicators alone. Without effective community-level accountability mechanisms, these dysfunctions risk becoming normalized. Accountability remains a formal principle rather than a lived reality, even when services appear to be functioning.

What African Experiences Reveal about Community-Led Monitoring

The most documented examples of community-led monitoring in Africa come primarily from East Africa. In several countries, community networks have established mechanisms to regularly collect data on access to treatment, medicine availability, and the quality of interactions within health services.

These initiatives have brought to light systemic issues that were previously underestimated, such as recurring stock-outs or delays in treatment initiation. When the findings were discussed through formal dialogue platforms with health authorities, they contributed to tangible improvements, particularly in supply chain management and service organization.

These experiences demonstrate that community-led monitoring can strengthen the quality of HIV services when it is institutionally recognized and when clear response mechanisms are in place. They also show that such monitoring cannot be improvised: it requires technical capacity, sustainable resources, and a minimum level of openness from institutions.

Community-Led Monitoring in West Africa and the MENA Region: Fragile but Essential

In other regions, including West Africa and the MENA region, community-led monitoring often exists in more informal forms. Community organizations play a critical role in reporting barriers to HIV services, especially for key populations. However, this information is rarely integrated in a systematic way into national monitoring frameworks or decision-making processes.

In North Africa, including Tunisia, strategic documents increasingly acknowledge the role of community actors. Yet accountability mechanisms remain weak and fragmented. Alerts from the field are often addressed on an ad hoc basis, without being embedded in continuous quality improvement processes. This limits the ability of health systems to correct dysfunctions rapidly and to prevent disruptions in HIV care pathways.

Across the MENA region, these challenges are compounded by restrictive legal and civic environments, which can constrain the capacity of community organizations to document and communicate critical analysis. As a result, community-led monitoring remains informal and its impact constrained.

Community-Led Monitoring, Human Rights and Equity

Even when it is not explicitly framed in human rights terms, community-led monitoring directly contributes to the realization of the right to health. By documenting experiences of discrimination, stigma, and breaches of confidentiality, it moves beyond abstract legal commitments and anchors rights in the everyday functioning of HIV services.

In African and MENA contexts, where certain populations face significant legal and social barriers, this function is particularly important. Community-led monitoring helps reveal how laws, administrative practices, and social norms translate into concrete obstacles to accessing HIV prevention, treatment, and care. In this sense, it operates as an equity tool within the HIV response.

Why Community-Led Monitoring Remains Under-Invested

Despite its demonstrated value, community-led monitoring remains underfunded and insufficiently institutionalized. Several factors help explain this gap. First, there is often an implicit concern that community-led monitoring could be perceived as confrontational, which discourages its formal recognition by institutions.

Second, funding for these activities is frequently fragmented and project-based. When community-led monitoring relies on short-term funding or volunteer engagement, its continuity and credibility are weakened. Finally, the absence of clear feedback and response mechanisms can discourage community actors, as accountability loses meaning when documented issues do not lead to visible change.

Making Community-Led Monitoring a Lever for Quality Improvement

For community-led monitoring to reach its full potential, it must be integrated into HIV systems. This necessitates integration into monitoring and evaluation frameworks, the assurance of sustainable resources, and the establishment of explicit mechanisms for institutional response.

Accountability cannot be one-directional. Information collected at community level must translate into concrete adjustments that are communicated transparently. Under these conditions, community-led monitoring can strengthen trust between communities and institutions and contribute to sustained improvements in the quality of HIV services.

Conclusion: Listening as a Condition for Action

The HIV response has repeatedly demonstrated its capacity to innovate and scale effective interventions. Yet these achievements remain fragile in the absence of robust mechanisms to listen, learn, and adjust. Community-led monitoring and accountability are not optional add-ons; they are essential levers for quality, equity, and sustainability.

In sub-Saharan Africa and the MENA region alike, investing in community-led monitoring means recognizing that the quality of the HIV response cannot be decreed. It is built, first and foremost, through meaningful engagement with communities.

References:
·  UNAIDS. Establishing community-led monitoring of HIV services (2021).
https://www.unaids.org/en/resources/documents/2021/establishing-community-led-monitoring-hiv-services
·  UNAIDS. UNAIDS Data 2023.
https://www.unaids.org/en/resources/documents/2023/unaids-data-2023
·  ITPC Global. Community Treatment Observatories.
https://itpcglobal.org/community-treatment-observatories/
·  World Health Organization. Consolidated guidelines on HIV, viral hepatitis and STI prevention, diagnosis, treatment and care (2022).
https://www.who.int/publications/i/item/9789240052390