Beryne Odeny

This session highlighted innovative ways in which communities can be effectively engaged to lead in developing robust data systems for monitoring and measurement of healthcare, rethinking whose priorities and indicators are paramount, and based on the PrEP scenario, how uptake of HIV prevention services can be objectively measured and judged.

Solange Baptiste discussed community-led monitoring (CLM) as a strategy for accountability and measuring health intervention impact. Data should capture the reality of the end-users/ communities receiving the interventions. This is not the same as “community-based monitoring” which is a function of where the data is being collected, not for whom the data is being gathered. Communities should be engaged from the outset, during needs and gap analysis, to solution generation. They should determine indicators and own the data collected about them. Communities have successfully implemented and adapted interventions to produce relevant programmatic changes that positively impact healthcare e.g., TB screening. Jason Reed gave an overview of the evolution of oral PrEP measures over the past 10 years, the successes and failures. This was a launching pad for redefining relevant and successful PrEP programme monitoring. The cyclic use of PrEP has emerged, thus PrEP monitoring should be tailored to capture periods of user exposure, need and risk, and it should not mirror constant use as required for treatment. Jason stated that “Prevention programs are not treatment programs.” Understanding whether intermittent PrEP use sufficiently cover risky periods is crucial. Specific targets are needed to determine global coverage gaps that often go unfunded.

Implementing CLM should be context-specific, thus account for different relationships between civil communities and governments to ensure win-win investments. Building community capacity to take on CLM by providing the requisite education in ethics and data management is vital to successful implementation. While measuring PrEP use data, it is important to gather information on event-driven PrEP use and associated factors. The “dark side” of PrEP should be considered – stigmatization by targeting products at specific groups can negate benefits of therapeutic products. Beyond science and data, thoughtful messaging and community engagement can support sustained and acceptable roll out of therapeutics.