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Lessons learned in community-led monitoring: early evidence from global study of the implementation landscape

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BACKGROUND: Achieving the global 95-95-95 targets is critically dependent on finding the missing positives, addressing unacceptably high loss to follow-up rates and reengaging people living with HIV into treatment and care.Community-led monitoring (CLM) is an important approach for improving the quality of healthcare services through social empowerment and political accountability.Driven by increasing support from donors, a growing number of countries are implementing CLM, creating an optimal time to identify early best practices in CLM implementation.
METHODS: Participants were recruited using a screening tool, disseminated by email and social media.Projects that met inclusion criteria participated in a quantitative survey and an individual interview.Surveys and interviews focused on developing a global mapping of CLM projects, identifying implementation arrangements and activities, and understanding best practices and challenges.Projects monitoring HIV, tuberculosis, malaria, human rights, and/or COVID-19 were included in the sample.
RESULTS: Thirty-five projects, representing 23 countries, completed the survey, of which 25 additionally participated in an interview.Projects most commonly monitored indicators related to HIV (82% of projects) and TB (74%), and most countries represented were in Sub-Saharan Africa (77%). The most commonly-reported donor was the Global Fund (61%), followed by PEPFAR (37%). Among projects' reported achievements were an increased capacity for local organizations to conduct advocacy (63%), collect data (60%), and more frequent and productive engagement with governments (60%).
Respondents described challenges around COVID-19 disruption (57%), sustainability of funding (54%), and human resources (46%). Additional challenges identified during interviews included funding levels and on-time disbursement, challenging funding models, project independence and data ownership, difficulties with timely data analysis, and the need for strengthened advocacy.
Best practices included early and continuous engagement with communities, host governments, and service users, hiring dedicated and paid teams, reducing funding intermediaries and ensuring on-time disbursements, and strengthening technical assistance for data use and advocacy.
CONCLUSIONS: With the rapid expansion of CLM, this study serves as a practical guide for CLM implementers, donors, and technical assistance providers.Successful implementation of CLM requires prioritizing community ownership and leadership, donor commitment to sustainable and reliable funding, and strengthened support of projects across the data collection and advocacy lifecycle.