Omar Morgan | Strengthening HIV response through community-led action

Jamaica has made significant strides in its response to HIV over the past two decades, but despite these gains, HIV remains a serious public health threat. According to the Ministry of Health and Wellness National Strategic Plan for HIV and STI 2023-2030, an estimated 28,000 Jamaicans are living with HIV, with an adult HIV prevalence of approximately 1.1 per cent.

Despite investments in HIV prevention, treatment and care, many Jamaicans still cannot fully access the healthcare they need, as stigma and discrimination, breaches of confidentiality and privacy, and unequal access to quality healthcare continue to prevent many from fully benefiting from important healthcare services. These and more continue to hamper Jamaica from achieving the goal of ending AIDS as a public health threat by 2030, and will require stronger and better health systems and meaningful partnerships, with civil society working in the response activities and communities affected by HIV.

These challenges framed the Community-Led Monitoring Stakeholder Forum, hosted by the Jamaican Network of Seropositives (JN+) on June 12, which brought together stakeholders from across Jamaica’s HIV response to examine how community-generated evidence can strengthen the health system.

WHAT IS COMMUNITY-LED MONITORING?

Community-led monitoring (CLM) means training people living with HIV, and other affected communities, to track their own experiences with the healthcare system. Things like, how they’re treated at clinics, whether their privacy is respected, and how easy it is to get care. That information is then used to identify problems and push for better services.

UNAIDS, in its Global AIDS Strategy 2021-2026, defines CLM as a process that empowers communities, particularly people living with HIV (PLHIV) and key populations, to systematically collect, analyse, and use evidence about their experiences with health services to improve healthcare delivery and strengthen accountability.

CLM matters because it closes a gap that conventional health-system monitoring often misses: the lived experience of the client once they leave the clinic door. Jumoke Patrick, chair of the Jamaica civil society forum on HIV and executive director of JN+, has pointed to Jamaica’s HIV treatment cascade to illustrate why this gap is consequential. Over 90 per cent of Jamaicans living with HIV have been diagnosed, but only 56 per cent remain in care and on treatment, and just 42 per cent have the virus fully suppressed. Diagnosis is only the first step; the harder challenge is keeping people engaged and staying in care, which depends on services that are welcoming and accessible.

Patrick outlined four pillars underpinning this approach: a rights-based approach to monitoring, evidence-based decision-making, strengthened State-civil society partnerships, and the sustainability and integration of CLM within the health system, arguing that it must move from a donor-funded exercise towards a routinely domestically supported and financed one.

ACCOUNTABILITY

In practice, CLM in Jamaica already generates the kind of evidence this shift requires. Andwayne Davis and Amy Scott, JN+’s strategic information and partnership manager and CLM coordinator, point to the Community Treatment Observatory (CTO), which collected feedback from over 351 PLHIV about their clinic visits in 2025. Most reported experiences are positive: 92.6 per cent describe clinic hours as convenient, 89.5 percent report smooth transitions within clinics, 79.8 per cent trust that their confidentiality is protected, and 94.9 per cent report experiencing no discrimination. Yet 18.5 per cent identify long waiting times as a reason for missing clinic appointments, a reminder that patient-reported data can expose service gaps.

A second tool, the Jamaica Anti-Discrimination System for PLHIV, tracks stigma and discrimination and reveals a more troubling pattern, with women accounting for 73 to 83 per cent of the 88 complaints received in 2024. The community setting accounted for 80 per cent of incidents, verbal abuse remains the leading form of discrimination, and confidentiality breaches rose from 25 per cent of cases in 2023 to 41 per cent in 2025. Together, these findings show how community-generated evidence helps JN+ and the broader HIV response pinpoint service gaps and advocate for more accountable services.

This kind of monitoring is not unique to persons living with HIV. Equality for All Foundation (EFAF) points to its Mystery Shopper Programme, which trains LGBTQ community members to anonymously assess healthcare facilities on service, confidentiality, accessibility, and respectful treatment.

Between 2023 and March 2026, EFAF conducted 77 such assessments across 20 facilities islandwide, finding improvement over time alongside persistent challenges around privacy and the negative treatment of gender-nonconforming clients. This underscores the broader point that CLM and community-generated evidence consistently surface problems that conventional, facility-led monitoring tends to overlook when it comes to service delivery.

INSTITUTIONALISING

The value of this evidence depends on what is done with it, and Jamaica’s CLM stakeholders are increasingly focused on institutionalisation rather than one-off data collection. Priorities include operationalising the national CLM Monitoring and Evaluation Framework through a dedicated Technical Working Group, building standardised digital monitoring systems, and routinely sharing findings with the Ministry of Health and Wellness, Regional Health Authorities, and community networks, rather than collecting them and leaving them unused. Importantly, there is also a growing push to extend CLM beyond HIV into non-communicable diseases, cancer screening, maternal health, and mental health, recognising its accountability gains are not confined to a single condition. This will require dedicated funding and the integration of CLM findings into health audits and corrective action plans.

Jamaica’s experience shows that community-led monitoring should become a permanent, domestically supported part of how the country holds its health system accountable for better service delivery.

Omar Morgan is the policy and advocacy officer at The Jamaican Network of Seropositives – JN+. Send feedback to columns@gleanerjm.com.