Communities in the Lead: NCD Alliance Launches an Introductory Guide to Community-Led Monitoring for Noncommunicable Diseases

05th December 2023

This World AIDS Day 2023, the NCD Alliance is proud to launch a new resource to generate awareness and enable communities to advance the response to noncommunicable diseases (NCDs).

The launch of the "Introductory Guide to Community-Led Monitoring for NCD Services" on World AIDS Day is aligned with this year’s theme, ‘Let Communities Lead’, emphasizing the critical role of community leadership in the HIV response and recognizing the substantial impact that communities, and especially people living with HIV, have made in the ongoing efforts to end AIDS. Engaging communities in the design and implementation of prevention and care programmes is critical for success in addressing both HIV and NCDs.

In the spirit of “nothing about us, without us” the Introductory Guide to Community-led Monitoring of NCD services underscores the significance of listening to and documenting the experiences of individuals seeking healthcare, with the aim of ensuring that services are not only available but also accessible and tailored to meet people's needs. It is grounded in NCD Alliance's commitment to meaningful involvement and draws inspiration from the experiences and solutions uncovered by individuals living with HIV through community-led monitoring efforts worldwide.

Community-led monitoring (CLM) is a community-driven, grassroots accountability mechanism used by affected communities to assess the accessibility and quality of health services. At its core, CLM is a participatory approach, led by affected communities which has the potential to redress knowledge and power imbalances and empowering communities in the accountability space. Designed to equip NCD alliances, advocates, and civil society organizations, the guide provides an initial exploration of how CLM can be applied to NCD prevention and service delivery.

Beyond providing technical information on the CLM process, the guide incorporates valuable insights from the experiences of national NCD Alliances, including people with lived experience of NCDs. It also features the CLM work of some national NCD Alliances, such as Ghana NCD Alliance. In collaboration with the Ministry of Health and Ghana Health Service, the Alliance has implemented a social accountability initiative to incorporate NCDs into the country’s existing system using National Community Scorecards, a social accountability tool that engages communities in assessing and measuring the performance of health and other services.

Recognising the interconnected health challenges faced by people living with HIV and those affected by NCDs, the guide proposes three broad approaches to CLM: stand-alone CLM for NCDs, the integration of NCDs into existing CLM programs for HIV, TB and Malaria, and utilization of existing CLM data to enhance NCD-specific service delivery and advocacy.

Commenting on the guide's release, and the virtual training that preceded it, Lucy John Bosco, founder at Diabetes Consciousness for Community in Tanzania stated, “As someone living with Type 1 Diabetes and conducting Type 1 Diabetes awareness initiatives, I think we need more of these practical resources, and this kind of training more often. With these skills, we can lead on monitoring health care delivery to prevent diabetes complications and improve health services for everyone."

NCDs persist as the leading cause of premature death globally, claiming the lives of 41 million people annually. Over three-quarters of NCD-related deaths occur in low-and middle-income countries, with NCDs serving as both a cause and a consequence of poverty. Like HIV, NCDs pose significant global health challenges.

By recognising the critical need to address NCDs and to build community-led accountability efforts, the guide advocates for a paradigm shift where people and communities, not diseases, are at the centre of health systems. NCD Alliance encourages civil society and lived experience advocates to explore this resource and consider opportunities for supporting or developing a CLM initiative in their context that can hold decision-makers and service providers to account.