health information systems

HIV Case-Based Surveillance System with Biometric Code and Patient Linkage and Retention Tool

What was the problem?

Before 2012, Haiti did not have a system for following HIV-positive patients along the continuum of care. The Ministry of Health (MoH) realized that the lack of an integrated surveillance system was contributing to difficulties in tracking and treating people living with HIV (PLHIV). Whether PLHIV chose to use a different health facility, discontinued care altogether, or died, there was no system in place to track these individuals. As a result, in order to advance Haiti’s efforts to end its HIV epidemic and meet the Joint United Nations Programme on HIV and AIDS (UNAIDS) 90-90-90 targets, the MoH developed one of the first longitudinal case-based surveillance systems in the Caribbean region.

HIV case-based surveillance is the systematic reporting of newly diagnosed HIV cases and sentinel events (Figure 1). Longitudinal records are created when HIV case-based surveillance data are reported to a central data repository where HIV-related events are matched and de-duplicated. Using longitudinal case-based surveillance data allows for the monitoring of key indicators in the HIV disease progression. Currently, few PEPFAR countries have longitudinal case-based surveillance systems in place to collect these type of data.

What is the tool?

A National HIV Reporting Electronic Platform in Haiti, known as Suivi Actif Longitudinal du VIH en Haiti (SALVH), integrates data from multiple sources into a single national dataset. HIV is a name-based notifiable health event, therefore all HIV testing facilities are required to report core sentinel surveillance events such as new HIV diagnoses, each previously diagnosed but unreported case, and each person who progresses to advanced HIV disease (Figure 1). At the site level, electronic reports of new HIV diagnoses from HIV testing sites, and multiple follow-up variables from the three electronic medical record systems (EMR) are sent to SALVH. Cases are then matched and de-duplicated to allow for longitudinal patient tracking (Figure 2). The data collected through the surveillance system allows Haiti’s MoH to stay informed of HIV cases, where they are located, patient mobility, and key service gaps. Additionally, the longitudinal data are used to track clinical outcomes and monitor quality of linkage to care.

Figure 1. SALVH Core sentinel surveillance events

Figure 1. SALVH Core sentinel surveillance events

Figure 2. SALVH Framework

Figure 2. SALVH Framework

SALVH Key Components

1.       Data reporting from voluntary counseling and testing (VCT) sites through EMR

2.       Regular data transfer from VCT sites to SALVH via a secure, electronic reporting interface

3.       Data cleaning and case matching and data quality reports to troubleshoot EMR transfer issues

  • Once data are cleaned and de-duplicated, they are placed in the National SALVH Database

4.       Analysis and visualization platform permits users with authorized access to create custom reports and dashboards from the National SALVH Database 

Key Outcome

SALVH is an important tool in obtaining efficient and actionable data to help end the HIV epidemic in Haiti. The use of longitudinal case-based surveillance data is crucial to monitor the country’s progress toward achieving the UNAIDS 90-90-90 targets, which aim to ensure PLHIV in Haiti are aware of their status, receive treatment, and are virally suppressed. The longitudinal case-based surveillance system practice can be implemented in other countries to aid in monitoring and controlling HIV.

For information on innovative approaches to advance the national case-based longitudinal surveillance system see Appendix A.

Improved Monitoring of the Key Population Cascade: The Need for Use of Customized Indicators

What is the problem?

Specialized non-governmental organizations (NGOs) frequently provide testing and prevention services for key populations (KPs). However, HIV care and treatment are typically only accessible via government facilities. NGOs, then, act as the mechanism to link KPs to HIV testing and treatment services. Existing monitoring and evaluation (M&E) frameworks do not enable NGOs to measure and report these linkage services. As a result, it is difficult to track progress toward epidemic control among key populations.

What is the tool?

LINKAGES, which is the largest global project dedicated to key populations, created by PEPFAR and the U.S. Agency for International Development (USAID), introduced a set of standardized, custom indicators for the KP clinical cascade in 2017. These new indicators were created with the intention of improving monitoring of the non-clinical activities conducted by NGOs in their engagement with KPs.

The Peer Navigator Enrollment Frontline Tool  (doc) is used at the point of enrollment in services to track client characteristics and history, services rendered, and health outcomes (including reporting on the customized indicators described in the below Customized Indicator Reference Sheet). 

Selection of New Indicators: These indicators were developed because MER indicators often do not represent the full package of services provided by KP programs. The list was generated by key staff from PEPFAR, USAID, and LINKAGES based on common gaps described in MER guidance and input was also requested from selected country teams and civil society partners. These new indicators are:

  • HTS_LINK

  • TX_LINK_NEW

  • TX_LINK_RETURN

  • COMM_SUPP_RET

See the Customized Indicator Reference Sheet (pdf).

Integrating New Indicators into Reporting Process: Minimal effort is required for the data collection required by these indicators. Dara are collected at the NGO/community level as the interventions described are conducted by non-clinical staff. One required input for the implementation of these indicators is the update of data collection forms to include the indicators for the NGOs.

Once proven useful for measuring NGO activities with KPs, larger-scale rollout can occur and these indicators can be integrated into the national reporting system. Minor edits and additions to existing strategic information tools will be needed.

Expected Outcomes: The expected outcomes of using these new indicators include: capturing information about KPs missed by MER indicators, closer monitoring of NGO activities and achievements, and identifying gaps in the services offered to KPs. The use of KP-specific custom indicators will more accurately track the number of KPs living with HIV (KPLHIV) that PEPFAR supports, as well.

Graphs demonstrating the gaps in existing data coverage, which Customized Indicators aim to fill.