Continuous monitoring of ERNs
The ERNs’ legal framework sets out objectives, principles, and criteria of the Networks and defines the general implementation process including their assessment, approval, and evaluation. Once positively assessed and approved, the ERNs are expected to perform and fulfil their mission and goals to be evaluated at least every 5 years period.
5-YEAR EVALUATION OF ERNs AND HCP MEMBERS
The objective of the ERNs is to ensure accessible diagnosis and treatment for rare and complex diseases. This care should be consistent across the EU/EEA as well as rare/complex diseases. To ensure this quality of care, a review process was planned from the inception of the Networks with a 5-year evaluation process after their initial approval (or last evaluation) to determine the worth or significance of the developed ERNs work and actions; in addition, an ongoing Continuous Monitoring Program has been put in place.
In 2022/2023, both the ERNs as Networks and their members as individual Health Care Providers (HCPs) from the 1st call will undergo a formal performance evaluation. The evaluation process is transparent and independent from the policy making and developed by an Independent Evaluation Body (IEB), appointed by the European Commission.
Member States, ERNs, and European Commission have identified the need to establish a solid and valid continuous monitoring and assessment system of the ERNs to allow a closer follow up of the activities performed by the Networks.
This system should help to build a quality improvement system, to define appropriate outcomes of the ERNs, to identify areas of success and potential pitfalls and to demonstrate the value of the ERNs, ultimately learning from the experience.
The Independent Evaluation Body (IEB), appointed by the European Commission for this process is Consortium IDOM & ACSA International. The evaluation will involve all the ERNs as network and their full members who joined the network in 2017.
Each HCP member should complete the self-evaluation trough the online tool (OEIT), a dedicated platform which can be accessed via the following URL: www.ern-assessment.com
CONTINUOUS MONITORING PROGRAM
In 2018, the Continuous Monitoring Program has started to evaluate the ERNs performance and ensure they are working towards their goals. With this aim, the European Commission devised a set of 18 core performance indicators to ensure that both, the Network and its members, continue to meet the requirements and high standards expected of all ERNs in contributing to the rare and complex disease community. At least once a year all HCPs involved in the ERNs provide insight into their data.
The ERNs need to demonstrate that the networks are delivering services
and functioning, but also their added value compared to what existed before.
System
Development of a workable continuous monitoring system of the ERN activities which can be utilised across all ERNs.
Reporting
Periodical self-assessment and reporting of the activities of the ERNs and HCPs (similar to the Assessment performed at the initial stage) to the European Commission and the Board of Member States for ERNs.
Assessment
Stronger involvement of Member States in the assessment of their national HCPs wishing to participate in, or participating already in related ERNs to ensure they have or maintain the required levels of expertise.
Independent
Complementary assessments, when considered necessary, by third parties (Indipendent Assessment Bodies).
ERN ReCONNET evaluation
As part of the Assessment, Monitoring, Evaluation and Quality Improvement System (AMEQUIS), set by the European Commission, the first five-years evaluation of the ERNs and their HCP Full Members is started in September 2022 and will finish in August 2023.
The general objectives of the Networks evaluation are to assess the level of:
- Covered areas as stated they would do (e.g., including geographical, diseases and conditions, and patient population)
- Development of the Networks (e.g., purpose, governance, leadership, learning and sustainability as well as its level of integration into national health systems)
- Accomplishment of planned activities
- Added value to the patients’ experience, both receiving services with each member and their pathway through the network
The evaluation of the individual HCPs are related to the following criteria:
- Constant specialized and quality care provided
- Keeping the necessary levels of activity and experience
- Contribution of the HCP team to the ERNs
- ERNs added value to the HCP
Please, find here some useful documents and the recorded webinar produced by the IEB:
- Evaluation Manual
- Evaluation Toolbox
- Operational Criteria for HCPs
- Self-evaluation form for HCPs
- Scoring guidelines for the HCP team
- Online ERN Assessment Tool guide
- ERNs – HCPs – Evaluation -FAQ
ERN ReCONNET ePAGs, patients representatives, play a key role in this evaluation process: for this reason, EURORDIS developed the following resources to help patients:
Patient Guide
FAQ factsheet
AMEQUIS webinar
