PrEP monitoring tool
Developing the tool
Under the guidance of ECDC, this tool was developed by a research team with specific thematic (i.e. HIV PrEP) and technical (i.e. monitoring and evaluation) expertise. Additionally, a multidisciplinary panel of clinical, public health and community experts, representing a diverse range of organisations and institutions from different Member States of the EU/EEA, guided the research process and provided feedback at all stages of the project. The research team took a three-phased approach to develop this tool.
A three-phased approach to the development of a PrEP monitoring tool for the EU/EEA
Phase 1: Evidence review
- Compilation of unpublished practice-based evidence across EU/EEA
- Review and synthesis of peer-reviewed and grey literature
Phase 1 involved a comprehensive review by collecting and synthesising relevant evidence (both published and unpublished) on indicators useful for the monitoring of PrEP programmes. A rapid online survey was sent out to national experts of different Member States, aiming to collect useful practice-based experiences with monitoring PrEP, as well as exploring the needs and expectations for a new monitoring tool. Additionally, we conducted a systematic scoping review of internationally published, peer-reviewed literature as well as grey literature to identify programmatic indicators currently used or suggested to monitor PrEP.
Phase 2: Consensus building
- Developing a set of evidence-informed candidate indicators
- Consensus-building on importance and feasibility of including indicators for monitoring in the EU/EEA
In phase 2, we focused on reviewing the evidence collected in phase 1 to develop a list of evidence-informed candidate indicators relevant for PrEP monitoring. In total, 21 candidate indicators were identified and derived from the evidence review. In the next step, a modified Delphi technique was used to find consensus among ECDC expert panellists on the final set of indicators to be included in the tool [9]. First, panellists quantitatively rated the perceived importance of the candidate indicators in an online survey. They also provided additional qualitative comments on the feasibility of operationalising the indicators, and could choose to provide suggestions for indicator improvement. After this online survey, an online group meeting was organised with the panel to agree on indicators that were suitable to be included in a ‘core set’ for collection across the EU/EEA (i.e. with high levels of perceived importance and feasibility), and to finetune indicator definitions to improve clarity and increase the feasibility of data collection. Through a second online survey and a final meeting among a smaller steering group of expert panellists to resolve remaining issues, the final set of ‘core’ and ‘supplementary’ indicators was endorsed. As a result of the consensus-building process, some candidate indicators were slightly adapted and improved to better fit the specific EU/EEA context. Therefore, the final list of indicators differed from the initial list of candidate indicators derived from the literature review in phase 1.
Phase 3: Final tool
- Developing the tool with feedback and advice from ECDC expert panel
- Publication of final report
In phase 3, the final list of agreed indicators was integrated in the format of a practical monitoring tool. The expert panel provided their final input and feedback before publication and dissemination of the current report.
Organisation of the tool
The main body of this tool consists of indicator sheets. These are developed to give a practical overview of the expected added value of each included indicator, and to outline how relevant data can be gathered to report on them.
In order to guide the reader through this tool, the indicator sheets are organised into three thematic domains that align with the key steps of an adapted PrEP care continuum: pre-uptake, uptake and coverage, and continued and effective use.
In addition, each indicator is assigned a level of priority for reporting by the Member States, based on the ratings from the ECDC expert panel. These priority levels include:
-
Core indicators
Essential indicators that should be feasible to report on.
-
Supplementary indicators
Indicators that are meaningful to report on, but the feasibility of reporting is context-dependent.
-
Optional indicators
Reporting on these indicators is only possible by using additional research efforts
The priority levels are colour-coded, with dedicated colours consistently used across the indicator sheets, in order to clearly link the indicators to their assigned level of priority.
The thematic indicator domains according to three key steps of the PrEP care continuum
Domain 1
Pre-uptake
Domain 2
Uptake and coverage
Domain 3
Continued and effective use
Priority levels for the reporting of the different indicators
-
Core indicators
These indicators were identified by the expert panel as providing very important information in key areas of the PrEP roll-out that are feasible to collect at the same time. Their unanimous high ratings for both importance and feasibility demonstrate their universal utility and applicability across different settings.
Hence, these indicators are considered ‘core’, and are deemed essential to be reported across EU/EEA countries, improving comparability at a regional level.
-
Supplementary indicators
These indicators were deemed important by the expert panel as they reported on meaningful aspects of successful PrEP implementation. However, the panel identified several potential feasibility issues towards their implementation.
Therefore, these indicators should be considered ‘supplementary’, as the ultimate decision on their reporting depends on the context and feasibility of specific EU/EEA countries.
-
Optional indicators
These indicators were seen as providing information that might be useful to guide particular aspects of the design and monitoring of PrEP programmes.
Yet, as these are only feasible to report on using additional research efforts (e.g. survey methods), they are considered ‘optional’. The ultimate cost-benefit of their reporting is determined by local implementers.
Core indicators
These indicators were identified by the expert panel as providing very important information in key areas of the PrEP roll-out that are feasible to collect at the same time. Their unanimous high ratings for both importance and feasibility demonstrate their universal utility and applicability across different settings.
Hence, these indicators are considered ‘core’, and are deemed essential to be reported across EU/EEA countries, improving comparability at a regional level.
Supplementary indicators
These indicators were deemed important by the expert panel as they reported on meaningful aspects of successful PrEP implementation. However, the panel identified several potential feasibility issues towards their implementation.
Therefore, these indicators should be considered ‘supplementary’, as the ultimate decision on their reporting depends on the context and feasibility of specific EU/EEA countries.
Optional indicators
These indicators were seen as providing information that might be useful to guide particular aspects of the design and monitoring of PrEP programmes.
Yet, as these are only feasible to report on using additional research efforts (e.g. survey methods), they are considered ‘optional’. The ultimate cost-benefit of their reporting is determined by local implementers.
How to use the tool
This tool is intended to navigate decisions on which programmatic PrEP indicators could be useful to monitor in the context of the EU/EEA, while providing insight into how these indicators could be measured and reported on.
This tool, therefore, does not set a normative standard. Rather, it provides guidance on the different options that are available to monitor PrEP programmes, as well as the rationale behind implementing certain indicators. The tool offers a prioritisation based on colour codes (see the short overview displayed in Table 1). For every indicator, key benefits and anticipated challenges related to data collection and reporting are highlighted in the indicator sheets.
Thus, this tool can be used to make informed decisions on the implementation of measurable indicators for PrEP programme monitoring adapted to the local context.