What was the problem?
Testing and prevention services for key populations (KPs) are often provided though specialized non-governmental organizations (NGOs), but treatment can usually only be accessed at government facilities. NGOs are often responsible for linking key populations living with HIV (KPLHIV) to treatment services. The current measurement and evaluation (M&E) framework does not allow them to report these achievements. As a result, it is difficult to track progress towards epidemic control among key populations.
What is the solution?
Linkages across the Continuum of HIV Services for Key Populations Affected by HIV (also known as LINKAGES) is the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and the U.S. Agency for International Development’s (USAID) largest global project dedicated to key populations. In 2017, the LINKAGES project introduced a set of standardized, custom indicators for the KP clinical cascade. The new indicators improve monitoring of non-clinical activities directly improving engagement of KPLHIV in the cascade. The new indicators are:
LINKAGES custom indicators and their relationship to MER indicators and the clinical cascade
What was the impact?
Several of these customized indicators will be critical in showing community-based organizations are essential in supporting key populations to obtain early antiretroviral therapy (ART), even if the NGO does not directly provide treatment. These “link” indicators will better capture actual work performed by NGOs and outcomes for KPs. Previous indicator definitions were not appropriate for these community-based organizations as they did not include peer navigation leading to ART services, a technique commonly used by NGOs specializing in KPs.
The use of KP-specific custom indicators more accurately tracks the number of KPLHIV PEPFAR supports. For example, one PEPFAR- supported KP program appeared to be a “poor performer” because they only enrolled 50 KPLHIV in treatment (column labeled “Enrolled in Clinical Care”) a 10 percent achievement on their target of 505.
Inclusion of KPHLIV ART enrollment custom indicator
By including a customized indicator tracking “HIV positive persons provided with care in the community (outside of health facility) to ensure they are linked and retained on ART” (last column labeled as “enrolled in community care”) the program showed an additional 450 KPLHIV were reached and enrolled in their community support intervention. Because these 450 individuals were not enrolled in PEPFAR-supported facilities for their ART services, they were not counted in the MER-specific clinical cascade.
Using the new indicator showed a relatively large number of KPLHIV who already knew their status but were not enrolled in clinical services. This information allowed the PEPFAR country team to increase their focus and resources on linking known KPLHIV to treatment in the next quarter, and demonstrated real-time data use for program improvement.
How does it work?
Identify gaps between NGO activities and MER indicators
Whenever an NGO is conducting individual-level activities that are directly impacting the KP clinical cascade but are not being captured in the MER should consider supplementing their program monitoring system with these indicators.
The selection of which indicator(s) to use or create depends on the scope of the KP program in each country. Because MER indicators often do not represent the full package of services provided by KP programs, many activities to improve access and coverage of the KP cascade are often not captured, such as:
- NGO linkages and referral to clinical services, including testing and ART enrollment.
- KPLHIV case management.
- Treatment adherence support and retention.
- Relinking KPLHIV who have been lost to follow-up.
Key field staff from USAID, LINKAGES, and PEPFAR headquarters discussed common gaps described in MER guidance and developed a list of draft customized indicators for countries to pilot. Input was also requested from selected country teams and civil society partners. It took approximately six months to finalize the custom indicators and integrate them into the standard reporting process (including a pilot phase).
Integrate new indicators in reporting processes
Data collection for these indicators requires minimal effort but produces large returns, as they provide a more holistic view of the contribution towards the identification of HIV positive persons and linkage to treatment. These indicators are collected at the NGO/community level as the interventions described are conducted by non-clinical/facility staff. Data collection forms for the NGOs need to be updated to reflect the inclusion of these indicators.
If proven useful, these indicators can be rolled out and integrated into the national reporting system to better advocate for resources for community-based programs serving key populations. Scale up can happen relatively quickly across countries as the indicators are simple and can be collected with very minor changes to existing strategic information (SI) tools.
Projects using the indicators have found them useful for telling the “whole story” of their programs. For successful implementation, there should be buy-in from staff working at all levels. Before introducing the new indicators, staff were told how they would be used and how they fit into the overall cascade. Existing frontline tools should be modified to ensure the required data is collected. After buy-in, scale occurs relatively quickly due to the minimal data collection burden.
In the future, more resources might be needed for advocacy purposes (to scale up to national and GF programs) and for the minor modification of existing national data collection tools and national data management systems. One potential challenge might be the lack of political will for the national government to formally adopt these indicators in settings with a deteriorating enabling environment for KP. The recognition of these indicators by the national HIV program may pose a challenge in the future, especially in countries were KPs are highly marginalized.