WHAT IS THE PROBLEM?

Placing communities and patients at the center of the HIV response is critical to controlling the HIV epidemic. In particular, collaborating with community members in a way that will identify barriers and enablers to accessing and utilizing HIV services is pivotal to PEPFAR’s client-centered focus. Approaches like Community-led monitoring allows communities to themselves design, implement and carry out routine, ongoing monitoring of the quality and accessibility of HIV treatment and prevention services. Through use of community-led monitoring approaches, PEPFAR programs and health institutions can pinpoint persistent problems, solutions or enablers, and barriers to service uptake at the facility- and community- level. This approach can help ensure PEPFAR is providing quality HIV services that beneficiaries want to utilize, improves the patient experience, and ultimately improves patient outcomes.

WHAT IS THE TOOL?

Community-led monitoring is a technique initiated and implemented by local community-based organizations and other civil society groups, networks of key populations (KP), people living with HIV (PLHIV), and other affected groups, or other community entities that gather quantitative and qualitative data about HIV services. The focus is on getting input from recipients of HIV services in a routine and systematic manner that will translate into action and change.

Through the use of quantitative and qualitative indicators, community-led monitoring initiatives have monitored a wide range of issues that are associated with effective and quality HIV service delivery. Community-led monitoring is especially important for gathering crucial information and observations regarding HIV service delivery from and about key populations and other underserved groups.

Community-led monitoring shares important methodologies with research – and can generate research – ready information. But, Community-led monitoring is distinct in that it is focused on improving service quality rather than generating generalizable knowledge. Community-led monitoring can be thought about in a general cycle in five parts: data collection, analysis and translation, engagement and dissemination, advocacy, and monitoring.

Figure 1. Five parts of the Community–led monitoring cycle

[Source: Health GAP, Accessed 16 March 2020,  https://healthgap.org/wpcontent/uploads/2020/02/Community-Led-Monitoring-of_Health-Services.pdf [1 MB]]

PEPFAR-supported Community-led Monitoring should be:

Who does it?

  • Conducted objectively by independent, local community organizations. PEPFAR Implementing partners who currently work on service delivery at the site level cannot be funded to do this work, even if they will sub-grant to a local civil society organization

What is monitored?

  • Systematic and routine, with follow up and continuous improvement. One-off assessments are not sufficient.
  • Tailored to the needs identified by local communities, with communities directly determining the scope allow for community and host country government development of the specific metrics, measures or tools to be used for community-led monitoring. Metrics or measures should be tailored to a given context, and address the needs and concerns of community members.
  • Triangulated with, but not duplicative of, other PEPFAR data streams. CLM data should reflect an ‘added value’ and not duplicate collection of routine data already available to PEPFAR through Monitoring Evaluation and Reporting (MER) indicators. ‘Added value’ monitoring data includes: information from beneficiaries about their experience with the health facility, information about barriers and enablers to access and retention in services etc.
  • Can use Site Improvement Through Monitoring System (SIMS) tools as needed, though there is no expectation that data from community-led monitoring activities will reported to S/GAC through current PEPFAR reporting mechanisms. SIMS tools may be utilized for specific and select SIMS Core Essential Elements (or Standards) that assess patient-provider experience. SIMS tools are publicly available.

How is monitoring done?

  • Productive, collaborative, respectful, and solutions-oriented.
  • Action-oriented with an associated follow-up process with the health facility that is overseen by U.S. government staff, committed to corrective public health action, and involves community advocacy to improve service outcomes.

COMMUNITY-LED MONITORING RESOURCES FOR PLANNING

In addition to these materials above, the following example implementation tools are organized according to the cycle shown in Figure 1.

COMMUNITY–LED MONITORING RESOURCES FOR IMPLEMENTATION AND MANAGEMENT

  1. Data Collection
    • Facility Manager Survey (PDF) [54 KB] [Source: Health GAP]
      • The Ritshidze (meaning “Save our Lives” in TshiVenda) Project is a Community-led monitoring system was developed by people living with HIV and activists to improve overall HIV and TB service delivery. Community groups that implement the Ritshidze Program in their communities could interview facility managers using this 17-question observational survey in order to understand the quality of HIV and health care service delivery.
    • Patient Survey (PDF) [55 KB] [Source: Health GAP]
      • Community groups that implement the Ritshidze Program in their communities could interview clinical patients using this 24-question observational survey in order to better understand the quality of available HIV and health care services.
    • Social Harms Reporting forms (PDF) [196 KB] [Source: PSI HIV Self Testing Africa Project (STAR)]
      • HIV Self Testing (HIVST) Implementation under STAR includes active social harm monitoring at the community level. Self-testers are encouraged to report any incidents of social harm directly to community stakeholders or community – based distribution agents (CBDAs). This document is made up of three different appendixes: Toll-free Helping Social Harms Reporting Form, Social harms and Adverse Events Grading Guide, and a Distributors Social Harms Tracking Form.
  1. Analysis and Translation
    • TBD
  2. Engagement and Dissemination
    • TBD
  3. Advocacy
    • TBD
  4. Monitoring
    • TBD

 

U.S. Department of State

The Lessons of 1989: Freedom and Our Future