Community-led Monitoring in Action: Emerging Evidence and Good Practice

"Principles of community engagement and leadership are upheld in numerous international declarations....The history of modern social movements also reveals the power of communities taking matters into their own hands."

The cyclical process of community-led monitoring (CLM) mobilises communities affected by health inequalities to systematically monitor how services are provided and co-create solutions with key partners to improve them as part of the community-led response. This report synthesises the available information on the value of CLM in 4 key areas: facilitating HIV and health services; creating an enabling environment; strengthening community systems; and crafting better-defined policies and investments. It seeks to support national decision-makers to scale up discussions around the value and contribution of CLM to national AIDS responses and other health programmes.

The report draws on a non-exhaustive literature review of published and unpublished materials provided by the Joint United Nations Programme on HIV/AIDS (UNAIDS) Secretariat (including country offices) and partners. Most published literature on CLM concerns HIV, but this report also shares insights and lessons learned applicable to other diseases and health contexts. Much of the available literature on CLM projects focuses on Africa, so those examples are most prominent in this report. The report was reviewed by and received written comments from over 20 organisations and individuals working on CLM around the world.

When designing or running a CLM programme or pilot, it is helpful to keep in mind that CLM, as part of community-led responses, is a process and not a one-off activity. The key steps in the cycle are:

1. Identify the needs of the affected community.
2. Collect information at the facility and community levels.
3. Analyse and interpret the information to suggest key action points and solutions.
4. Disseminate the information to key stakeholders (e.g., clients, facility managers, government representatives), and co-create solutions with them.
5. Monitor any changes for affected communities.

To be responsive, CLM must be flexible, able to adapt to changing circumstances, and guided by community-defined priorities and core CLM principles, which include:

• CLM is independent from donors and from national governments.
• CLM is built by communities, from identifying priority indicators to preparing questions and defining preferred channels of communications, from monitoring to owning and housing the data.
• CLM is led by directly impacted communities, such as people living with HIV, tuberculosis (TB), or malaria and people from key populations.
• CLM includes advocacy activities with the aim of generating political will, while focusing on advancing equity and accountability.
• CLM adheres to ethical data collection, consent, confidentiality, and data security. Data collection must be verifiable, reliable, conducted in a routine or continuous cycle, and collected under "do no harm" principles.
• CLM data are owned by communities, and programmes are empowered to share CLM data publicly. CLM programmes should not re-gather or duplicate monitoring and evaluation data from existing systems.
• CLM monitors are representatives of service users, and are trained, supported, and paid adequately for their labour, while maintaining community independence from donors.
• CLM is coordinated by a central, community-owned structure capable of managing the effort.

The report shares many examples that illustrate how CLM can improves the effectiveness, quality, and accessibility of health programmes. CLM: empowers communities affected by HIV, TB, and malaria; strengthens community-based and community-led networks and organisations; and builds local leadership. CLM also enables people to demand high-quality services and fulfilment of their human rights, while contributing to a country's disease programmes and strengthening the health system.

Emerging evidence demonstrates that broader health systems benefit from embedding robust and flexible CLM models in their infrastructure. The experience of the COVID-19 pandemic shows that CLM can be deployed for new disease outbreaks if the communities most affected are in the lead. In some countries, CLM identified medicine stockouts even under mobility restrictions due to lockdowns. In other countries, COVID-19 accelerated the expansion of CLM from a vertical HIV approach to a multi-

disease approach.

Beyond health systems, CLM produces other positive outcomes, such as strengthening community networks and community-led organisations, building relationships between grassroots organisations and government officials, and encouraging service beneficiaries to speak up to receive better care. Ultimately, CLM empowers individuals and communities to engage with local government and power structures, which in turn cultivates a culture of participation, where citizens hold their representatives and other duty-bearers to account.

The report goes on to outline good practice, both when beginning CLM and once CLM programmes are established. For example, it is important to:

• Ensure communities are leading.
• Establish clear roles and responsibilities for each stakeholder, particularly the government, community groups conducting CLM, donors, and technical support agencies.
• Create a sense of shared commitment around using CLM data to improve programmes.
• Create an enabling environment for CLM to work

The report also examines various implementation challenges, such as: ensuring the principle of community-led; owning and safeguarding data; being aware of bureaucratic gridlock; managing conflicts of interest; developing a robust and flexible CLM continuum; measuring how CLM increases meaningful engagement of communities in health responses; and fostering sustainability of CLM.

A series of recommendations are offered for specific groups:

• Governments - e.g., open spaces for civil society organisations to report CLM data, and welcome their consideration in all decision-making related to public health priority-setting and policy and law reforms to enable people from key and marginalised populations to access equitable health care and justice.
• CLM implementers - e.g., document stories, results, lessons learned, and qualitative data to use for advocacy.
• Technical assistance providers - e.g., create a focused online and offline space where technical assistance providers can exchange information and troubleshoot challenges.
• Technical agencies - e.g., establish and strengthen partnerships with other disease responses and other sectors to expand the global community of CLM practice.
• Donors - e.g., engage with and open spaces for community-led partners, organisations, and networks to liaise with governments on the value of supporting CLM, helping to address scepticism and broaden awareness of the positive impact.

The report concludes with annexes that offer: CLM definitions and descriptions; suggestions for further reading; and references.