Table 3 Recommendations for collection and integration of CBVCT testing and linkage to care data into national surveillance systems for HIV, STIs and viral hepatitis

1. The country context should be taken into account when interpreting CBVCT M&E data, particularly with regards to the availability of tests for CBVCT services, barriers to testing and barriers to treatment

In order to increase diagnosis and treatment, particularly for key populations, it is crucial that CBVCT services have access to tests and are able to link clients to care following a reactive test result. In some countries there are regulations that prevent PWID diagnosed with hepatitis C from accessing treatment, leading to questions around the ethics of testing people who cannot access treatment when diagnosed with infection. CBVCT services should have access to tests and all clients with a reactive test should be linked to appropriate care and treatment

2. Quality assurance of CBVCT services should be supported

National surveillance and M&E institutions should consider how to support CBVCT services to collect good quality data. Quality assurance in CBVCT services should extend beyond data collection processes and should incorporate promotion of good testing practices, capacity building for staff and volunteers as well as quality assurance of testing kits

3. The contribution of CBVCT services to diagnoses should be recognised

Integrating CBVCT M&E data into respective national surveillance and M&E systems for these infections and disseminating reports will increase recognition of the contribution of CBVCT services in diagnosing these infections. The ECDC’s Dublin Declaration Advisory Group has made steps towards increasing recognition of CBVCT for HIV services at the European level by including questions about community-based testing in their Dublin Declaration Monitoring Questionnaire in 2018 and 2020

4. A unique client identifier can be used by CBVCT services to monitor repeat testers

Use of a unique client identifier is an option for CBVCT services as an alternative to collecting client names. The unique client identifier can be an alphanumeric code based on a number of personal questions which uniquely identify the client while ensuring that the client does not need to remember their code for different visits. Clients who do not wish to provide information for constructing the unique client identifier should be allowed to access testing regardless

5. Using a standardised set of indicators is necessary to ensure data is comparable within a country and between countries

To ensure CBVCT M&E data is comparable among CBVCT services within a country and between countries it is necessary to use a standardized set of indicators. A minimum and extended set of CBVCT M&E indicators has been agreed upon by INTEGRATE project. Pilot activities have demonstrated that the data necessary to obtain estimates for these indicators is feasible to collect in the community setting. When possible, the use of a standardized data collection tool makes it easier to calculate the estimates for the standardised set of CBVCT M&E indicators

6. Before implementing new reporting requirements, national surveillance and M&E institutions should understand what data CBVCT services are already collecting and if it is compatible with the recommended indicators

CBVCT services often already collect data necessary to estimate the recommended set of CBVCT M&E indicators. National surveillance and M&E institutions should try to use available data as far as possible and not unnecessarily increase the data collection and/or reporting requirements. Adding unnecessary reporting requirements uses the CBVCT services’ limited resources and can damage relations between the national surveillance and M&E institutions and CBVCT services

7. The indicator “Proportion of new diagnosis with first reactive test at CBVCT service” is essential to understand the contribution of CBVCT services to diagnosis

It’s important to collect the indicator “Proportion of all new diagnosis in a country with a first reactive test at a CBVCT service” in order to understand the contribution of CBVCT services to diagnosis of these infections. The data for estimating this indicator can be collected in one of the following ways: 1) CBVCT services and surveillance system using a common unique identifier to identify patients linked to care from CBVCT services; 2) CBVCT services collecting self-reported data from clients about confirmatory testing and linkage to care; 3) Estimating the indicator by triangulating the information about the number of reactive tests in CBVCT services and the number of reported new diagnoses to the national surveillance and M&E institution each year. The method of collecting the data to estimate this indicator will depend on the country context

8. All stakeholders must “buy in” to the objective of integrating data

Integrating CBVCT M&E data into the national surveillance and M&E system requires the cooperation of all stakeholders. Clear common goals can facilitate this. For example production of an annual surveillance and M&E report for respective infections that include data about M&E of CBVCT services which is publicly available online and can be utilised by the CBVCT services can contribute to better collaboration

9. The use of online data collection which the national surveillance and M&E system has access to can reduce reporting burden

There are free tools for data collection that can be used by CBVCT services and, with the agreement of CBVCT services, sent to national surveillance and M&E systems. Using an online tool which the national surveillance and M&E system has access to can reduce reporting burden and ensure standardised data. The COBATEST Network has a free data collection tool (access through www.cobatest.org), which is used by the Catalan Network of CBVCT services so that data is harmonised and can be collected and analysed centrally without burdening CBVCT services with extra reporting tasks

10. Where compliance with data protection legislation is an issue, countries can collect estimates for the M&E indicators from CBVCT services instead of collecting disaggregated (case-based) data

In light of the EU General Data Protection Regulation (GDPR), sharing case-based data with the national surveillance and M&E institution may present a problem for CBVCT services if they have not already asked for the client’s consent. Instead of sharing disaggregated (case-base) data with the national surveillance and M&E institution, CBVCT services can calculate and submit estimates of the CBVCT M&E indicators. CBVCT services should be offered technical support when necessary to ensure they can estimate these indicators correctly