5-year evaluation
The European Commission has established a continuous monitoring system for the European Reference Networks. This task is an obligation for ERN members and Affiliated Partners, who have to provide information on the number of rare disease patients treated in their clinic as well as other activities in support of the network (e.g. CPMS, publications, and education and training activities). The gathered information is compiled by the ERN´s network team and submitted to the European Commission.
The next data collection is coming up in March 2023. We will contact all HCP members in January 2023 to begin submitting the required data for 2022.
5-year evaluation of the ERNs
The 5 year evaluation process of the ERNs has officially started following the signature of the contract with the independent evaluation body on 9 November. In 2023, the 5-year evaluation process with AMEQUIS will take place for all 24 ERNs and their respective healthcare providers, which were established during the initial call in 2017. The Independent Evaluation Body (IEB) is the consortium IDOM/ACSA, which will provide us pracical guidance during a webinar on 12 December. On that day, the self-assessment tool and the guide to the evaluation platform will also be made available. The evaluation calendar is demanding and for orientation you may wish to note that future steps will include:
- the self-assessment of clinical units and of the ERNs (to be completed by 30 January);
- on-site audits to a sample of clinical units (expected to take place from March to May);
ERNs and HCPs draft evaluation reports prepared by the IEB (ERNs and HCPs will be asked to provide comments, if any, from April to June).
Objectives of the evaluation processThe general objective of the evaluation process is to verify and assess:
a) The fulfilment of the criteria and conditions set out in Delegated Decision 2014/286/EUb)
b) The accomplishment of the objectives set out in Article 12(2) of Directive 2011/24/EUc)
c) The outcomes and performance of the Network and the contribution of each Member).
d) The achievement of the objectives and quality of the deliverables produced within the ERNs Specific Grant Agreements (SGAs)
All these evaluation elements must be integrated into an evaluation report that shall include conclusions on the following aspects of the Network
- Structure: How is the ERN covering the areas it stated it would (including geographical, diseases and conditions, and patient population)
- Maturity: At what stage of development is the network regarding its purpose, governance, leadership, learning and sustainability; level of integration into national health systems.
- Activity: To what degree has the ERN completed the activities it planned to perform; scale and ambition of the achievements.
- Impact: What has been the value added to the patients’ experience, both receiving services with each member, and their pathway through the network; impact locally, useof ERN tools.
The evaluation of the individual Members of the Network should assess
- If the HCP continues to provide specialized and quality care
- If theHCP team maintains the necessary levels of activity and experience
- What has been the contribution of the HCP team to the Network
- The value of the ERN for the HCP
Timeline for the evaluation process:
The evaluation process may take between 10 to 12 months, from the appointment of the Independent Evaluation Body to the issuance of the final evaluation reports. The deadlines and timeline are subject to change at the discretion of the European Commission and the Independent Evaluation Body. The following diagram outlines the different phases of the evaluation process:
5-year evaluation, update (October 2023)
The last phase of the 5-Year-Evaluation is due and we are very proud to announce that all of our initial 50 members filled out the self-evaluation. 21 HCPs needed to hand in an Improvement Plan (IP) of which 16 were able to resolve the raised issues via the comment section. In the end, only 5 HCPs out of 50 needed to hand in an IP. Overall, we as NCT from ERN-LUNG are very proud of these numbers, which show that our members are very actively involved in our network and concerned with improving the structures for the future.
ERN-LUNG’s healthcare has been recognized as patient-tailored, thanks to its patient engagement. Our focus on analysing patient participation in the network has yielded outstanding results. We aim to build on this success in the future. We also conduct numerous training and awareness activities to maintain high care standards.
In terms of improvement, we are working on a new assessment tool to track member activity and enhance the governance and coordination structure within ERN-LUNG. We have developed a large number of tools for education and training. In particular, through the European Respiratory Society (ERS), ERN-LUNG members have received education and training activities such as clinical training fellowships, e-learning courses (ERN-Lung Academy) and webinars. Despite that, the gap between Western and Eastern European Countries is not closed yet and may represent a barrier to the achievement of homogenous quality standards of care and needs to be addressed.
The overall result of ERN-LUNG has been satisfactory, and we are committed to working on the identified areas for improvement to strengthen our network. We want to say thank you to our members who invested many capacities and resources to take part in the evaluation process and highly value their efforts. Without them, this result would not have been possible. As we look ahead, we are planning to offer stronger support, in order to strengthen the membership and impact of their activity in the healthcare of rare lung diseases and will support the implementation of the IPs as well as overcoming the obstacles that lay ahead.
For more information, please do take a look at the Amequis flyer or other information materials i.e. the Amequis assessment toolkit or assessment manual
ENDO-ERN has produced some very helpful videos regarding the evaluation process, which walk you through the whole process step by step
Take a look at the webinar on the ERN 5-year evaluation process which was produced by members of the EC and held on December 12, 2022
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