Community-Led Monitoring (CLM) is a strategy that engages communities to identify areas of improvement in HIV services, and has been adopted by multiple countries as a part of their HIV response. CLM’s model in India is unique, owing to the manner in which it works in coordination with government bodies to ensure sustainability and scale, while remaining community-centric.
CLM aims to give a voice and platform to communities who are high-risk groups, for them to elaborate upon the challenges they face and influence decision makers. Representatives from these communities, who are known as ‘Community Champions’, serve as a liaison between their community and programme implementers, healthcare providers and decision makers. They interact with key populations at HIV and TB service facilities to understand the challenges encountered when availing healthcare services, based on which areas of improvement and suggestions for service delivery enhancement, are identified.
The CLM programme gives key populations a platform to express their concerns and speak about their challenges. In this manner, CLM enables communities to influence the improvement of HIV services, while also giving them a louder and more prominent voice in the HIV ecosystem. As CLM works towards better, more inclusive and stigma-free healthcare for all those in need, they play a crucial role in democratising HIV care.
Democratisation of HIV care can take place only when the correct information, that is based on community feedback, reaches decision makers, for them to make informed decisions. With evolving community needs and expectations, Community Champions are able to ensure that all stakeholders have the most relevant information to make choices that suit the current requirements of communities and serve their needs efficiently. This process also enhances the knowledge of Community Champions, enabling them to serve as a second line of leadership for their communities, after the government.
Wider access to information and healthcare facilities is also essential for the democratisation of HIV services and healthcare. For HIV care to be accessible, infrastructure should support a variety of needs and service providers should be able to provide judgment-free environments. To hold service providers accountable and for key populations to be empowered, all members of key populations require access to information about HIV and their rights as PLHIV, if applicable. Through the feedback collection process, information about needs related to infrastructure and interactions with healthcare service providers can be gathered, which can enable the creation of environments where key populations feel safe, confident and accepted.
While Community Champions interact with key populations and establish a sense of common purpose between programme implementers, service providers, themselves and high risk groups, they also encourage key populations to overcome feelings of isolation, fear and denial, which can help empower them.
For HIV care to truly be democratised, the right knowledge, convenience, and the empowerment of key populations is imperative. This can be achieved through the active participation of communities and the sharing and analysis of accurate information. As in any democracy, Community-Led Monitoring is a process that is by the people and for the people, with power being distributed amongst communities as well.
When looking for the complete empowerment of key populations, the road ahead is a long one, but a hopeful one. By working on improving factors related to the accessibility, affordability, availability, acceptability, awareness and appropriateness of HIV care, Community-Led Monitoring is working towards democratising healthcare and improving India’s overall public health.
