Publication of the strategy on the development of European Reference Networks
Earlier this year, the Board of Member States of the European Union published the strategic guidelines for the implementation of the European Reference Networks (ERN). They were developed by a working group following the last conference of the Council held in Lisbon in October 2015.
The document contains several important messages for healthcare providers planning to lead or join an ERN. The guidelines reiterate that an ERN must improve the access to diagnosis, treatment and the provision of high-quality healthcare to all patients who have conditions requiring a particular concentration of resources or expertise, and should also be focal points for medical training and research, information dissemination and evaluation. The Board of Member States is competent to decide on which type of ERNs to approve and on which criteria that should apply. The assessment will be based on their level of maturity, relevance and expected added value for healthcare in Europe.
The added value for EU citizens should be based on the pathologies that constitute the scope of the ERN and which healthcare services the ERN will provide. Therefore, any network that submits an ERN application should clearly show how the network will deliver benefit to the whole patient care pathway and the connections with the patients’ healthcare centres in the country of origin that will facilitate cross-border healthcare. For Rare Diseases the recommended scope of proposed ERNS has been published already (Link). The document confirms that the number of networks should be limited to ONE per thematic group.
In developing processes for the establishment of ERN, the objective of building on existing skills and experience should be clearly explained and evidenced wherever possible. The ERN will be reviewed by an independent body, and the results will be available to Member States of the Board who will then decide the network eligibility on the basis of its added value for European citizens.
Another important message is that the Board deems it unfeasible to establish all thematic networks at once; therefore, further calls should be launched in due time, as provided in the legal base, so that all potential thematic groups of rare and low prevalence and complex diseases and conditions will in time have the opportunity to be covered by a Network. The tentative date for further calls should be communicated in the near future.
The document reaffirms that healthcare providers are able to apply to join established networks at any time. New members joining an existing network must meet the same conditions applied to existing members. To ensure that non-Member healthcare providers are able to access the expertise of the ERN, the document emphasises the importance of ERNs indicating entrance pathways for the affiliation of centres others than the approved members of the Network. ERN applicants are encouraged to liaise with National authorities, where appropriate, to identify a list of potential affiliated partners, for collaboration with the network from the outset. Evaluation of affiliated partners is a matter of national designation.
To address gaps and reduce overlap, the MS and European Commission will evaluate and address long-term transversal and structural issues across networks. This includes development of overarching structures, such as common datasets and the linking of databases or quality registers, bioinformatics, IT and e-Health tools. In addition, it is proposed that specialised laboratory services, sequencing diagnostic capacities and clinical interpretation support could be developed as a horizontal theme with priority across relevant thematic areas. In order to facilitate data exchange and development of common structures, financial support should be sought for within such mechanisms as Connecting Europe Facility (CEF), Horizon 2020, or similar existing or future initiatives.
The priority thematic areas and the eligibility requirements will be published in the first call, which should be out in early March.
Read the policy paper on the implementation of the ERN
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