European Reference Networks: a new concept came to reality

The 3rd official European Reference Network (ERN) conference took place in Vilnius, Lithuania, on the 9th of March. The following day was dedicated to the kick-off meetings for the 24 thematic European Reference Networks (ERNs). This was a major event, involving approximately 600 delegates, and was organised under the auspices of the President of the European Commission Jean-Claude Junker, the Commissioner on Health and Food Safety Vytenis Andriukatis and the Ministers of Health of Lithuania (Aurelijus Veryga) and  Malta (Christopher Fearne) as well as of Françoise Grosstête, former rapporteur of the Directive of cross-border healthcare.

The main conference consisted of the opening addresses, followed by four multistakeholder roundtables, dedicated to the following topics: organisation and management of ERNs; EU policies and supporting Actions to ERNs; ERNs and national healthcare systems; and the way forward for the new ERNs. It was emphasised that ERNs have been built on the framework of the 2011 Directive on Patients’ rights in cross-border healthcare, which entered into force in Member States in 2013. All agreed that this unique, innovative mode of healthcare organisation will be a game-changer for the millions of patients suffering from a rare disease in Europe. Over 900 healthcare units are now interconnected to share their expertise, spread good practice, generate data and engage in research, for the benefit of every patient in every participating country. Speakers emphasised that ERNs are not closed clubs of experts talking and working together, but should be open networks linked effectively with national healthcare providers, and thus embedded in the national health systems. The delegates of the conference noted how effectively patient representatives have been embedded in all aspects of ERNs, including the governance, via the ePAG initiative – this active participation ensures that patients’ voices will be heard, and should enable the broader patient community to benefit from the ERNs locally in their countries. In the near future, new healthcare providers (HCPs) will be able to join the Network as ‘affiliated’ partners (in one of the three categories defined in the legal Acts) in order to allow countries without representation in an approved ERN to access the expertise of that Network and therefore open the ERN ‘door’ to all patients in Europe requiring that knowledge.

Considerable emphasis was placed on the importance of the ERNs’ work being supported by adequate information technology and eHealth tools, which play a valuable role in facilitating collaboration. Further information was shared, concerning the dedicated platform that will be provided by the European Commission in order to facilitate data exchange and sharing. A key challenge for this clinical data management platform in future will be the degree of interoperability with national health systems – there is major potential here to transform the way rare and complex cases are managed in health systems broadly.

The first day ended with official awarding of certificates to the 24 ERN Coordinators – a watershed moment, making years in the making.  The official advent of ERNs is both exciting and challenging, and this feeling was very much evident at this milestone event – we are on the threshold of a decisive moment for the diagnosis, treatment and care of rare diseases. ERNs are an excellent example of collaboration across stakeholder groups, across geographical borders and across both care and research domains – in summary, ERNs are a perfect embodiment of the European Union (« union » being a key word here) in action.