Community Data Matters: A Look Into Community-led Monitoring (AIDS 2022 Plenary)

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ITPC Executive Director Solange Baptiste delivered a plenary address on health innovation at AIDS 2022, entitled “Community Data Matters: A Look Into Community-led Monitoring.” 

The presentation touched upon what CLM is (and what it is not), the steps in the CLM methodology, and concrete examples of how CLM-derived data has been used to engage with decision-makers to achieve concrete changes for people living with HIV, including: expansion of multi-month dispensation of ART, reduction in stock-out times, and faster return of viral load results. CLM data has also been used to identify weaknesses in health systems, including documentation of stigmatizing healthcare provider behavior against key populations; massive drops in HIV testing rates in the COVID era (especially among KPs); and spikes in teenage pregnancies exactly 9 months after COVID lockdowns.

She closed by making the point that although some progress has been made “We are still skeptical about the community role beyond advocacy and demand creation leading to under valuing of community data and by extension CLM.” She put a challenge to the HIV response in line with the famous proverb quoted by Chinua Achebe, “Until the lions have their own historians, the history of the hunt will always glorify the hunter.”

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