Annex 3. Increasing the voice of the people through community-led monitoring

Community-led monitoring occurs when people accessing health care or people affected by inequalities systematically monitor services. This includes collecting and analysing data, and conducting evidence-driven advocacy to improve service delivery, generate solutions and create an enabling environment for well-being (1). Some of the core principles of community-led monitoring include that it is independent from donors and national governments; communities decide what to monitor and how to act on the results; and there is an emphasis on advancing equity, advocacy and accountability. Community-led monitoring should adhere to ethical data collection, consent, confidentiality and data security, and the data should be shared publicly (1).

Communities – or groups of individuals that have something in common – may organize on the basis of a common place of residence or other factor, such as age, ethnicity, experience of disadvantage, health need, occupation, religious affiliation or shared interest (2).

Community-led monitoring helps to ensure the perspectives of diverse populations are part of efforts to drive changes to policies, programmes and practices that seek to benefit those populations. The outputs of community-led monitoring are important for informing and strengthening recommendations generated from health inequality monitoring, especially when they include a focus on populations experiencing disadvantage. Seeking input from groups engaged with community-led monitoring across the earlier stages of the health inequality monitoring cycle can help to align the monitoring activities with their needs (3). Box A3.1 describes community engagement, participation and empowerment in relation to community-led monitoring.

BOX A3.1. Community engagement, participation and empowerment

Community engagement refers to the involvement of communities in decision-making and planning by “developing relationships which then allow for working together,” further linking the concept to collaboration, power-sharing and partnership (2). Community engagement, which is initiated by government actors, is distinct from community participation, which is initiated by citizens or beneficiary groups.

Empowerment can be defined as “the process by which people gain control over the factors and decisions that shape their lives. It is the process by which they increase their assets and attributes and build capacities to gain access, partners, networks and/or a voice, in order to gain control” (4).

Community-led monitoring has been instrumental in galvanizing national and global responses to pertinent health issues, with notable examples from around the world. In western and central Africa, regional community treatment observatories were established across 11 countries with the aim of improving access to antiretroviral medicines for people living with HIV (5). Extensive data collection from nearly 100 000 young people, more than 35 000 people from key populations and more than 105 000 people on antiretroviral therapy revealed several challenges, including a lengthy gap in returning viral load test results to clients. Social movements driven by activists and people living with HIV have had a powerful impact on raising awareness and pushing for action to redress injustice and inequity related to health (6).

There are limitations and considerations for the application of community-led monitoring approaches to health inequality monitoring. In some contexts, there are insufficient linkages and accountability gaps between communities and higher levels of the health system, meaning community-led monitoring efforts may lack impact. For example, in Kenya, community awareness of the role of health facility committees was found to be low (7), suggesting a need for stronger linkages between community-led monitoring and oversight mechanisms and the broader community. There may also be funding constraints in citizen accountability initiatives – related partly to the politics of community-led monitoring, but also to the extent to which this is a priority in some countries (8, 9).

Yet, there are promising opportunities and lessons for integrating the ethos of community-led monitoring into health inequality monitoring. Communities are increasingly recognized as social systems rather than passive beneficiaries of services, alerting the fact that there may be significant divergences between community priorities and international actors such as donors (10). Accordingly, the integration of community monitoring mechanisms and national data systems has the potential to encourage the local use, interpretation and application of data (11). Decentralization and self-government efforts offer an enabling legal or statutory framework for community-based and community-led efforts to have the strength needed for impact and additional revenue streams for implementation (some of which may be outside the health sector).

Globally, detailed guidance on community-led monitoring has been developed (1), with increased attention to the institutionalization of social participation for health (12, 13).

References

1. Community-led monitoring in action: emerging evidence and good practice. Geneva: Joint United Nations Programme on HIV/AIDS; 2023 (https://www.unaids.org/sites/default/files/media_asset/JC3085E_community-led-monitoring-in-action_en.pdf, accessed 23 September 2024).

2. Voice, agency, empowerment: handbook on social participation for universal health coverage. Geneva: World Health Organization; 2021 (https://iris.who.int/handle/10665/342704, accessed 23 September 2024).

3. Inequality monitoring in sexual, reproductive, maternal, newborn, child and adolescent health: a step-by-step manual. Geneva: World Health Organization; 2022 (https://iris.who.int/handle/10665/351192, accessed 23 September 2024).

4. Health promotion. Geneva: World Health Organization (https://www.who.int/teams/health-promotion/enhanced-wellbeing/seventh-global-conference/community-empowerment, accessed 23 September 2024).

5. Community-based monitoring: an overview. Geneva: Global Fund to Fight AIDS, Tuberculosis and Malaria; 2020 (https://www.theglobalfund.org/media/9622/core_css_overview_en.pdf, accessed 23 September 2024).

6. Let communities lead: World AIDS Day report 2023. Geneva: Joint United Nations Programme on HIV/AIDS; 2023 (https://www.unaids.org/sites/default/files/media_asset/2023WADreport_en.pdf, accessed 23 September 2024).

7. Goodman C, Opwora A, Kabare M, Molyneux S. Health facility committees and facility management: exploring the nature and depth of their roles in Coast Province, Kenya. BMC Health Serv Res. 2011;11(1):229. doi:10.1186/1472-6963-11-229.

8. Flores W. Legitimacy from below: supporting indigenous rights in Guatemala. In: Brechenmacher S, Carothers T, editors. Examining civil society legitimacy. Washington, DC: Carnegie Endowment for International Peace; 2018 (https://carnegieendowment.org/files/Civil-Society-Legitimacy_FINAL.pdf, accessed 23 September 2024).

9. Kesale AM, Mahonge CP, Muhanga M. The functionality of health facility governing committees and their associated factors in selected primary health facilities implementing direct health facility financing in Tanzania: a mixed‐method study. Health Sci Rep. 2022;5(3):e611. doi:10.1002/hsr2.611.

10. George AS, LeFevre AE, Schleiff M, Mancuso A, Sacks E, Sarriot E. Hubris, humility and humanity: expanding evidence approaches for improving and sustaining community health programmes. BMJ Glob Health. 2018;3(3):e000811. doi:10.1136/bmjgh-2018-000811.

11. Global Fund Technical Evaluation Reference Group. Position paper: thematic review on resilient and sustainable systems for health (RSSH). Geneva: Global Fund to Fight AIDS, Tuberculosis and Malaria; 2019 (https://archive.theglobalfund.org/media/8793/archive_terg-resilient-sustainable-systems-for-health-review_paper_en.pdf, accessed 23 September 2024).

12. Koonin J, Mishra S, Saini A, Kakoti M, Feeny E, Nambiar D. Are we listening? Acting on commitments to social participation for universal health coverage. Lancet. 2023;402(10416):1948–1949. doi:10.1016/S0140-6736(23)01969-4.

13. Social participation for universal health coverage: technical paper. Geneva: World Health Organization; 2023 (https://iris.who.int/handle/10665/375276, accessed 23 September 2024).