As the 24th International AIDS Conference wrapped up, the focus shifted to the importance of community-led monitoring (CLM) and how it can bring about targeted action and change in the fight against HIV.

Pradeep Kakkattil, Director of the Office of Innovation at UNAIDS and conference moderator, highlighted how HIV/AIDS had always pushed the envelope in terms of innovation.

Kakkattil was joined by Dr Weiming Tang, an epidemiologist, the Co-Director of the University of North Carolina Project-China and Associate Professor of UNC-Chapel Hill, and South Africa’s Solange Baptiste, the Executive Director of the International Treatment Preparedness Coalition (ITPC).  

How HIV has led the way

“There are so many areas we can touch upon. Let’s look at access to medicine and treatment. You’d have to take between eight to 14 to 23 pills a day in the early days. Now, you can take one pill or even an injectable, which is great news,” said Kakkattil. 

Kakkattil also mentioned how the cost of treatment has also improved. Treatment costs dropped from $15 000 (R248 557.50)  per year, per person, to as low as $75 ((R1242.79) per year, depending on location.

“Financial innovations such as the global fund is a testament to what the AIDS movement has achieved. We could look at all of these aspects, but today, we are focusing on harnessing digital health and how we can leverage that to end AIDS.  We’ll also take a look at what we’ve learnt from community lead monitoring”, said Kakkattil. 

Digital health defined

According to Dr Tang, digital health is the application of digital technology to improve the health of human beings. It has two components: the first involves digital technology, and the second requires health innovation.

“Digital interventions in HIV have six key components; these are prevention messages, developing HIV and testing services, increasing PrEP uptake and adherence, refining big data algorithms for their surveillance, optimising clinical interventions and assisting mental health services”, said Dr Tang.

Prioritising CLM

Baptiste continued the session by sharing why community-led monitoring (CLM) should be a priority.

“All too often we think of new pills, injectables and some new gadgets as innovation in health,watch researchers leaving accountability interventions around service delivery further from the mind”, said Baptiste.

Baptiste continued: “Community-led monitoring (CLM) is a global health innovation which is necessary, valuable and reliable.”

Excellent talk by Solange Baptiste at #AIDS2022 on CLM – community lead monitoring – placing control over how impact monitoring of services in the hands of the community – Communities selecting to monitor impact based on what they care about & not researchers priorities pic.twitter.com/65jHWHN8XD

— Chiva (@ChivaProjects) August 1, 2022

CLM is best understood in the context of the wider range of interventions that communities lead, such as community-led research, community-led advocacy and citizen science”.

According to Baptiste, CLM is not community-based monitoring that focuses on where people are. It is not the monitoring of people by governments. Nor is it providers carrying out monitoring projects with the support of recipients of care.

Communities take the lead

“Community-led monitoring is just that. Communities lead it, focusing on who is leading the work. CLM researchers are monitoring services by communities where they are the end-users. 

It is a process where communities take the lead to monitor issues that matter to them routinely. Communities then work alongside policymakers to co-create solutions to the problems they have identified,” said Baptiste.

ITCP’s community-led monitoring model begins with education because communities have to be knowledgeable of and updated on the science behind the disease and normative guidance that govern the standard of care they should expect. It then goes on to evidence collection advocacy and engagement.

“CLM is a full methodology. Forty of our 58- day data collectors are from key and vulnerable populations. Thereby enabling a reduction in stigma and sensitisation is increased”, said Baptiste.

Challenges facing CLM

Baptiste touched on some of the challenges of CLM. There is a varying nature of what is being scaled, and there is a need to accommodate donor indicators but still find ones relevant to the community. Sustainability concerns also exist because of a lack of refined propositions.

“The field needs much more investment and research. The main problem is that we have improved, but we are still sceptical about community roles beyond advocacy and demand creation. This leads to an undervaluing of community data and, by extension, CLM,” said Baptiste.

Baptiste said community-led monitoring is a critical health innovation tool in our arsenal. – Health-e News