Community-Led Monitoring: Data-Driven Responses in the Face of COVID-19

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Focusing on Key and Vulnerable Populations

Richard Lusimbo, Director General, Uganda Key Populations Consortium�Member, Community-Led Accountability Working Group of CLM TA Providers

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Presentation Outline

• Defining key and vulnerable populations
• Community-led responses, data-driven decision-making
• Impact of COVID-19
• Successful strategies; challenges and limitations
• Case studies
• Recommendations and conclusions

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Who are key and vulnerable populations?

Key and vulnerable populations are groups of people who were (and are) at higher risk of exposure and/or severe outcomes from COVID-19 due to their social, economic, or health status.

Including: older adults, key populations, people with HIV and other underlying medical conditions, people living in poverty, people experiencing homelessness, people with disabilities, and people belonging to racial or ethnic minorities.

What is Community-led Monitoring (CLM)?

A cycle of monitoring and advocacy led by communities trained to gather and analyze data about the accessibility and quality of health services, and then use those findings to hold service providers and decision makers to account. Communities use data to generate solutions to programs uncovered through monitoring. CLM is an essential tool for delivering on the global 95-95-95 targets.

CLM is an “accountability mechanism (i.e., a watchdog function) for health services, CLM should not be confused with community-based HIV service delivery or with the routine collection and reporting of internal programme data by community-led organizations.” (UNAIDS, Establishing Community Led Monitoring of Health Services)

What is Community-led Monitoring (CLM)?

CLM in action: data driven responses

Despite variation in design, CLM programs require adherence to basic principles:

• Independence; community leadership embedded every step. Communities decide what and where to monitor, program structure, etc.
• CLM data must be controlled and owned by communities
• CLM must include advocacy activities aimed at generating political will and advancing equity
• Community monitors must be service users, trained, supported, and adequately paid for their labor, while maintaining the independence from donors (See: CLM: Best Practices for Strengthening the Model)

CLM in action: data driven responses

• The continuous CLM cycle of data collection, analysis, solutions generation, and advocacy creates measurable improvements in service delivery
• Data generated by communities enables targeted, effective community responses, while CLM evidence results in more effective action by duty bearers at all levels of the health system (facility level, national, and global)

CLM in action: data driven responses

CLM in action: data driven responses

Community-Led Monitoring, PPPR and COVID-19

Key and Vulnerable Populations-led CLM during COVID-19

CLM in a time of COVID: adapting for accountability

During COVID-19 and subsequent outbreaks (eg Ebola in two Districts in Uganda), we adapted HIV, TB and malaria CLM platforms to address pandemic threats including:

-Disruption of essential services resulting from lockdowns (of health system, education system, judiciary) as well as displacement of health system interventions to prioritize COVID-19

-Human rights violations experienced by key populations, people in childbirth, young people experiencing gender based violence

-Lack of access to medical countermeasures, particularly for people with HIV, health workers

Such responses, can help identify the needs and priorities of different populations, monitor the spread and impact of the pandemic, evaluate the effectiveness of interventions, and communicate relevant information to stakeholders

CLM in a time of COVID: adapting for accountability

• Community trust in the health system is vital for effective PPPR
• CLM empowers communities to demand health system accountability, building authentic trust in the health system through co-equal partnership that respects the agency and autonomy of directly impacted communities �CLM is essential for effective PPPR:
• Using data from the level of the service user, CLM shines a light on what is actually happening, and the effectiveness of interventions
• CLM gets vital community analysis to duty bearers in real time

CLM in a time of COVID: adapting for accountability

Focus on key and vulnerable populations essential during COVID-19: higher risk of exposure, infection, severe illness, or death from COVID-19,

KVP experience greater barriers to access to services. Due to the stigma and discrimination, many key populations do not have access to access health services and social protection. Therefore, they are not a priority and some feared to go access health services.

COVID-19 disproportionately affected key and vulnerable populations, both directly and indirectly, by worsening their health outcomes, increasing their social and economic hardships, and exacerbating the inequalities and injustices they face.

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Impact of COVID-19 on Key Populations

COVID-19 disproportionately affected key populations in several ways, such as:

• Increasing their vulnerability to infection, severe illness, and death, due to underlying health conditions, co-infections, stigma, discrimination, and violence.
• Disrupting their access to essential HIV prevention, testing, treatment, and care services, due to lockdowns, mobility restrictions, supply chain disruptions, and diversion of resources.
• Exacerbating their social and economic hardships, due to loss of income, food insecurity, housing instability, and lack of social protection.
• Exposing them to human rights violations, such as arbitrary arrests, harassment, extortion, and abuse by law enforcement and other authorities,

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Addressing challenges of key and vulnerable populations during COVID-19:

• Providing timely and accurate information on the availability, accessibility, affordability, and quality of COVID-19 prevention, testing, treatment, and care services and commodities, and identifying any gaps, shortages, or barriers.
• Measuring the level of satisfaction or dissatisfaction of key and vulnerable populations with the health services they receive, and capturing their feedback, suggestions, or complaints.
• Verifying and evaluating the implementation and impact of COVID-19 policies, programs, and interventions, and ensuring transparency, accountability, and responsiveness of health authorities and providers.
• Documenting and reporting any cases of human rights violations that affect the access and quality of health services for key and vulnerable populations, such as discrimination, stigma, violence, harassment, criminalization, or coercion.
• Advocating for improved service delivery, policy change, and resource mobilization that address the specific needs and priorities of key and vulnerable populations, and protect and promote their rights and dignity.

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CLM in a time of COVID: adapting for accountability

From 2021-2022, CLM platforms in South Africa, Uganda, Malawi, Kenya were expanded to support monitoring focused on COVID-19 interventions, as well as disruptions in health service delivery measured real-time clinic disruption and closures during COVID-19;

• South Africa’ CLM program Ritshidze, COVID-19-focused data collection targeting communities most at risk of COVID-19 infection, which was used to direct duty bearers to serious health service disruptions in real time. As a result, duty bearers supported rapid roll out of multi-month dispensation of ARVs (see: Resilient Advocacy in the Time of a Pandemic)
• In Uganda, CLM monitors tracked extensive human rights violations experienced by LGBTQ+ people, sex workers, women in labor, as well as children with HIV and their caregivers. For example, monitors engaged HIV positive children and their caregivers across Uganda to expose duty bearers to the harms of COVID-19 lockdown policies that did not plan for continuity of essential HIV treatment and prevention services (see: Left Behind Under Lockdown).
• Drawing on the data from CLM programs and the experiences of service users, advocates in Kenya, Malawi, Tanzania, Uganda, and Zimbabwe demanded strong COVID-19 and HTM mitigation measures in PEPFAR’s 2021 Country Operational Planning (COP21) exercise. Across these countries, 62% of COVID-19 demands were incorporated into the final COP documents (as compared to 57% of overall demands) (see: Measuring Up: Tracking PEPFAR’s Accountability to People Living with HIV 2021-22)

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Deep Dive: Open Letter to the President

Commended the efforts and leadership of the government in fighting COVID19�Expressed dismay at the difficulty and deaths of pregnant women, children, and people living with HIV and other non communicable diseases in accessing health care services during the lockdown

Proposes solutions:

• Excluded pregnant women from lockdown
• Decentralizing power to the Local Council Chairpersons to handle emergency cases of sick people, pregnant women and children
• Providing ambulances and cars at the community level and allow personal vehicles and boda bodas to transport patients with authorization from the LC1 Chairperson
• Urged the government to prioritize the lives of Ugandans and prevent unnecessary deaths

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Deep dive:: involvement of sex workers

Bad Black, a very popular sex worker, was involved in the campaign calling for sex workers across the country to adhere to Ministry of Health guidelines. Her involvement in the campaign, became viral and created conversations on the internet

Case study three: Advocacy and Distribution of COVID-19 relief

• A community-led initiative in Uganda led by UKPC and partners provided nutritional and health support to KPs, who faced increased food insecurity, violence, and HIV risk during the COVID-19 pandemic.
• The initiative engaged the Global Fund to secure funding for food packages, condoms, lubricants, and antiretroviral drugs (ARVs) for the target population.
• The initiative also advocated for the protection of KPs’ human rights, and challenged the arbitrary arrests and raids by the police that violated the COVID-19 guidelines.
• The initiative facilitated the movement of pregnant mothers to access maternal health services, by providing them with travel permits and transportation.
• The initiative delivered food and essential commodities to the communities, using door-to-door distribution by peer educators and volunteers, and adapted to the COVID-19 restrictions by using bikes instead of cars.
• The initiative ensured the continuity of HIV care for the target population, by dispensing ARVs for six months instead of the usual one or three months, and by providing adherence counseling and support through phone calls and messages.

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Recommendations and conclusions

• Community-led data-driven responses are effective in addressing the challenges and needs of key and vulnerable populations even beyond the COVID-19 pandemic .
• Community-led data collection and analysis can provide timely, accurate, and relevant information to inform policy and program decisions. This should always be prioritised
• Community-led data dissemination and advocacy can increase awareness, engagement, and accountability among stakeholders and decision-makers especially when there is absence of data .
• Community-led data-driven responses require adequate resources, capacity, and support from governments, donors, and partners .
• Community-led data-driven responses can contribute to the achievement of the Sustainable Development Goals and the Universal Health Coverage agenda .

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What works: successful strategies

• Involve KPs from the start. Using the power of people living with HIV and key populations to transform information on health systems into life-saving advocacy campaigns
• Developing models of care and differentiating them based on feedback from communities is far more impactful than just imposing interventions that are not inclusive
• Providing timely and accurate information on the availability, accessibility, affordability, and quality of health services and commodities, and identifying any gaps, shortages, or barriers is essential in having an evidence and data based approach
• Verifying and evaluating the implementation and impact of health policies, programs, and interventions, and ensuring transparency, accountability, and responsiveness of health authorities and providers
• Documenting and reporting any cases of human rights violations is essential. This affect the access and quality of health services for key and vulnerable populations, such as discrimination, stigma, violence, harassment, criminalization, or coercion
• Advocating for improved service delivery, policy change, and resource mobilization that address the specific needs and priorities of key and vulnerable populations, and protect and promote their rights and dignity

What doesn’t: challenges and limitations

• Lack of political will, support, and recognition from health authorities and providers, who may perceive CLM as a threat or a burden
• Lack of resources, capacity, and skills among community organizations and groups, who may need training, equipment, funding, and technical assistance to conduct CLM effectively and efficiently
• Lack of coordination, collaboration, and communication among different stakeholders, who may have different agendas, interests, and expectations from CLM
• Lack of standardization, harmonization, and validation of CLM tools, methods, and indicators, which may affect the quality, reliability, and comparability of the data collected and used
• Lack of protection, security, and safety for community monitors and participants, who may face risks of violence, harassment, intimidation, or retaliation from hostile or corrupt actors

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Thank you!

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More information: �https://ugandakpc.org/

https://pepfarwatch.org

https://clawconsortium.org

And visit us at booth 39, Community Village, CLAW Consortium �

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