How can data improve health outcomes for people living with HIV?

Problem Statement

 The Democratic Republic of the Congo (DRC) consists of 26 provinces, with 23% of the total DRC population living in Kinshasa, Lualaba and Haut-Katanga. These provinces have a rapidly growing population estimated at 21.9 million in 2020, including 14.4 million in Kinshasa, 2.5 million in Lualaba, and 5 million in Haut-Katanga. Approximately 50 percent of the total number of people living with HIV (PLHIV) in the DRC are located in these 3 provinces.

The HIV epidemic in the DRC is generalized, with a prevalence of 1.20 percent based on the 2013/2014 DHS, with 505,707 people living with HIV out of an estimated population of 106 million (calculated based on UNAIDS estimates [version 5.86]). Prevalence is higher in urban areas (1.6 percent) versus rural areas (0.9 percent) and the burden of HIV is higher among women than men 25 years and older (268,896 female PLHIV v. 97,979 male PLHIV). According to UNAIDS, a majority of HIV transmission in DRC is through heterosexual contact, exacerbated by high-risk sexual practices (such as having multiple concurrent partners) and low or inconsistent condom use. Although there is insufficient data on the location, typology, and dynamics of key populations and high-risk groups, prevalence among female sex workers (FSWs) is estimated at 5.4 percent in Kinshasa, 7.4 percent in Lualaba and 4.6 percent in Katanga (IBBS 2018-2019).[1]

Population size, widespread poverty, and decades of conflict have resulted in the DRC’s lack of a cohesive and functional health system. The updated Sustainability Index and Dashboard (SID) identified systemic weaknesses that include a fractured and unresponsive supply chain, weak laboratory and sample transport systems, slow and incomplete information management systems, and a lack of institutionalized quality assurance systems across all areas of the program. Generally, access to healthcare services is complicated by poor infrastructure, including weak human and institutional capacity, inadequate roads and the lack of electricity and water at many health facilities – all factors which pose challenges to the goal of achieving epidemic control.

Furthermore, ineffective monitoring systems and weak accountability relationships between health service providers and people living with HIV (PLHIV) remain at the heart of the challenges encountered in making HIV care and services available and accessible, resulting in increased HIV prevalence rates in the high population provinces.

This leads us to consider that the problem statement to be addressed is the lack of reliable data and accountability in the delivery of HIV care and services and the need to provide a way for PLHIV and local communities to engage more effectively in monitoring HIV care services and in self-advocacy to finding solutions and resolving issues they identify and to provide health authorities a tool to assess the availability, access to, and the delivery of quality HIV care and services and allow them to course-correct in real-time with data generated from the frontline by PLHIV and communities.

The Solution

Our approach to accountability is unique and builds on CERC’s deep experience in creative integrity, governance, and accountability in South Kivu. A plethora of research evidence found that community monitoring, when combined with community self-advocacy, led to better quality, and more frequently utilized health services, and improved health outcomes. However, community monitoring alone had negligible impact.

In this context, the Patient-Led Monitoring combined with self-advocacy may be one important way to improve availability, access to, and delivery of quality HIV care, given that beneficiaries have the most to benefit from improved health services. This approach is designed to provide a way for PLHIV and local communities to engage more effectively in self-advocacy to ensure availability, access to, and delivery of quality HIV care and services by contributing to finding solutions and resolving issues they identify.

This approach is grounded in the Centre de Recherche sur l’Anti-Corruption’s experience in implementing Community-led monitoring programmes; well-tested and validated programming in this fragile context; and wide-ranging conversations with local partners and stakeholders in South-Kivu.

[1] PEPFAR. Democratic Republic of Congo country operational plan (COP) 2020 strategic direction summary, March 2020, Accessed on 4 December 2020