Using community-led monitoring to hold national governments' & PEPFAR HIV programmes accountable to the needs of people living with HIV for quality, accessible health services
BACKGROUND: With just 10 years to UNAIDS' global target of '95-95-95', persistent accessibility and quality of HIV treatment and prevention services challenges must be corrected. Service delivery quality indicators like retention, viral load suppression, and advanced HIV disease show many countries are failing to strengthen weak HIV service cascades. Community-led monitoring (CLM) is an innovative response to this crisis. People living with HIV (PLHIV) and other communities directly impacted by poor quality services routinely collect and analyze evidence from sites and patients directly and identify root causes of poor outcomes (e.g. rude treatment by staff). CLM trains, supports, equips, and pays members of directly affected communities to carry out routine, ongoing monitoring of the quality and accessibility of HIV treatment and prevention services and uses those data to highlight performance problems, generate solutions, and hold decision-makers accountable to fix them.
DESCRIPTION: CLM is a continuous cycle: communities 1) gather evidence on the state of HIV and health services, 2) analyze data, 3) generate solutions, 4) engage duty bearers to adopt solutions and 5) advocate for change if solutions are not adopted. Differentiating CLM is the use of evidence-based advocacy: evidence is used by PLHIV, key populations, and other direct users of HIV services to hold national governments, PEPFAR, and the Global Fund accountable.
LESSONS LEARNED: Ritshidze (Tshivenda for 'Saving our Lives') was built to address South Africa's persistent HIV retention crisis. Ritshidze monitors more than 400 sites in 27 districts across 8 provinces, focused on the poorest performing clinics representing >50% of people on treatment. Data generated is used to hold duty-bearers accountable including health department officials at all levels, and PEPFAR. Ritshidze training, monitoring, and advocacy materials are being used and adapted in developing CLM programmes in several countries.
CONCLUSIONS: Systemic challenges undermine access to quality services for PLHIV, as shown by variable country progress in treatment retention and viral load suppression. Ritshidze's model of independent CLM shows promise as an innovative approach to holding the duty-bearers accountable to the priorities of the communities of service users, using community-generated evidence and advocacy based on that evidence.
A. Yawa * (1), N. Rambau (2), L. Rutter (3), B. Honermann (4), L. Norato (5), M. Kavanaugh (5).
(1) Treatment Action Campaign, Johannesburg, South Africa, (2) Ritshidze, Johannesburg, South Africa, (3) Health Gap, Johannesburg, South Africa, (4) amfAR, Washington DC, United States, (5) Georgetown University, O''Neil Insitute, Washington DC, United States