Darren Shilhan, ERN eUROGEN Lead IT & Data Performance Analyst, writes:
On 1 September 2022, the process to evaluate the ERNs and their Full Members will officially begin. This is part of the AMEQUIS framework, which aims to ensure that ERNs remain responsive to the needs of the rare disease patient community, deliver on their objectives, and improve their performance over time.
As a reminder, AMEQUIS stands for Assessment, Monitoring, Evaluation and Quality Improvement System. Whilst the AMEQUIS project has since concluded, it produced a refined process and criteria to assess the applications of new HCPs and new ERNs (the ‘A’ part of AMEQUIS). Furthermore, it will allow the ERNs and their members to systematically monitor, evaluate, and improve their activities to achieve a higher level of performance, spotting areas of best practice and areas for improvement (the ‘MEQUIS’ part of AMEQUIS).
An essential part of this process is evaluating the ERNs and their Full Members every five years. The evaluation will be performed both at the Network level and the level of each individual Full Member of the ERN.
The ERN eUROGEN Coordination Team will handle the network-level evaluation. Regarding the Full Member evaluation, only those who joined the network in 2017 are included in the evaluation process at this time. It will aim to assess:
- If the HCP continues to provide specialised and quality care,
- If the HCP team maintains the necessary levels of activity and experience,
- What the contribution of the HCP team has been to the Network,
- The value of the ERN for the HCP.
In practical terms, the ERN eUROGEN Coordination Team will send you more detailed explanations of what is required in the coming weeks. You have been sent the link to the Evaluation Manual and Evaluation Toolbox previously, but you can click here to find these documents if you do not have them.
In the meantime, to summarise, an Independent Evaluation Body (IEB) has been appointed by the European Commission to oversee the whole process. You will be initially required to do a self-evaluation based on seven thematic areas, each comprising several measurable elements for which you will need to provide evidence. After that, this will be returned to the IEB, who will organise an online or on-site audit with a sample of full members from each ERN to follow up on those self-evaluations.
If you have any questions or concerns, there will be a chance to discuss this process at the ERN eUROGEN Strategic Board Meeting on 13-14 September 2022, in Nijmegen, NL. In addition, the ERN eUROGEN Coordination Team will follow this process closely and help members as much as possible with the evaluation process.