Data Collection

Harmonization of community-based data with national information systems.

As testing programmes expand and become integrated, it is vital that progress is monitored locally and nationally. Despite a gradual increase in countries conducting monitoring and surveillance, difficulties remain in monitoring performance of testing programs at all levels and linkage to care due to significant gaps in the data available. The existing separation of datasets between national surveillance and community-based testing sites undermines the ability of all stakeholders to understand and assess the opportunities and challenges facing testing programs.

INTEGRATE has worked on addressing some of these challenges and opportunities by identifying processes that can facilitate the integration of testing and linkage to care data for HIV, Hepatitis and STIs into surveillance and M&E systems, helping to produce meaningful national datasets that capture the activities of the various organisations conducting testing, such as community based testing and health care settings. Pilots were conducted in Poland, Serbia, Slovakia, Slovenia, Spain and Estonia.


Consensus set of indicators to assess the impact of the ETW on testing

  • This report explains the process of improving ETW monitoring and evaluation and proposed a list of core indicators for CBVCT services and health care settings to assess the impact of ETW activities.

Consensus recommendations for collection and integration of CBVCT testing and linkage to care data on national surveillance systems for HIV, viral hepatitis and STIs

  • This document contains the list of consensus indicators for collection and integration of community testing and linkage to care data for HIV, STIs and viral hepatitis into national surveillance and M&E systems. The document also presents the consensus recommendations to help the countries with this integration. 


Patient experience survey

An important part of monitoring the effectiveness of interventions to increase testing, diagnosis, and linkage to care is monitoring patient experience and outcomes. In a patient-centred approach, patient outcomes are not just clinical metrics, but also patient-reported measures such as satisfaction with service and quality of life. Understanding the barriers to testing and linkage to care experienced by patients is needed to identifying areas for improvement and gaps in the patient pathway. INTEGRATE has conducted patient experience surveys for people living with HIV and hepatitis C in Croatia, Romania and Spain. 


Patient experience toolkit 

  • The report describes the principals on how to use surveys to collect data on patient experience of healthcare services. This data can be used to inform service planning and to ensure services meet the needs of the user.