European Reference Networks’ first steps : praises and uncertainty

Saturday 24 November 2018

Launched in Vilnius in March 2017, the ERNs are currently in their early stages as new international players in the public health field. How this evolvement is being received by the medical community ? The case of the ERN-Skin might be a starting place to answer the question.

Participants in the ERN-Skin training session, held yesterday in Rome

Disseminating information instead of transporting patients

In order to improve the care of 30 millions European people affected by the a rare disease, the European Union created the European Reference Networks. These structures are conceived to facilitate the exchange of information on patients to obtain faster diagnosis and more effective treatments. A total of 24 ERNs are currently operating, all of which include 900 care units and 300 hospitals among 26 Member States, with a view to collaborating when a member of the network faces a complex clinical situation. Indeed, every ERN is organized so that concerned "healthcare providers" (HCP) can integrate them to profit from high-added value expertise, which is crucial to treat the particular patients they can be confronted with. In this way, healthcare professionals working in a HCP caring rare disease patients are able, via digital platforms, to share data and set up teleconsultations with experts. In other words, many doctors have now access to the knowledge of the medical specialists they need.

Simplified schema of a specific ERN

Sharing experience for the benefit of sufferers

The system was thought to avoid that any patient is compelled to move to different locations, which was inevitable before since a rare disease always involves consulting different medical specialists. However, now the healthcare professionals have to move to international trainings and conferences to listen to rare diseases experts working for the ERN. When leaving the sessions held at the paediatric hospital Bambino Gesù in Rome, the interviewed practitioners do not question the usefulness of ERN-Skin trainings : “ The trainings of this ERN have a high scientific value because they deal with the latest advancements to treat the patients better […] It was very useful to meet experts coming from other countries to share our experiences about the management of patients affected by rare diseases ", declared Katarina Sorsakova Tmovska, a Slovakian dermatologist specialized in paediatrics in Bratislava. "Coming to this conference was very important to me because this kind of lecture, focusing on specific subsets of genetic diseases, are very rare. Consequently, I can benefit from the expertise and knowledge of numerous people involved in these diseases", confirmed Luca Lovrecic, a clinical geneticist from Ljubljana.

Bringing knowledge to countries with limited medical services

Another reason explaining the success of the ERN’s international sessions is their ability to teach skills that could not be acquired elsewhere." It is a real pleasure to be part of the ERN-Skin network, because Finland is a small country and we have few patients affected by rare diseases. [...] It is therefore essential for us to integrate ERN to have collaborations and contribute to more research. Last year, Helsinki welcomed the first training session of the l’ERN-Skin [...], which was a significant step towards a better patient care", explained enthusiastically Katarina, a doctor settled in the Finnish capital. Liam Mercieca, a Maltese counterpart, added : "Malta is a small island. We have a few good dermatologists and no experts in rare skin diseases. Since our population is also small, we do not have to specialize in diseases that we encounter infrequently. However, it remains essential to keep contact with foreign specialists to cope with our complex cases, but also to access to the results of experiments we cannot conduct locally. All these elements are very interesting for us and our patients can only benefit from them."

How to coexist with current institutions ?

Even if the ERN project is largely supported, one major question remains : will the national health systems be unsettled ? Véronique Héon-Klin, a physician specialized in public health and rare diseases and author of "ERN for rare diseases, which conceptual framework ?", has the following analysis : "as long as the priority will be granted to exchange of information and knowledge, and as long as the intervention of foreign experts will be justified, the ERNs will constitute an ideal European cooperation structure that will not impede the smooth running of national systems. Being mindful of gathering evidence of the added value brought by the ERNs will also be a key success factor to maintain their legitimacy". Besides, other questions should be asked. Will medical practice and career evolution be affected ? Will there be consequences on the balance "competition-cooperation" between health establishments ? Last but not least : will patient associations obtain a role in a system that, at the moment, does not take them into account ? In a context where boundaries between individuals and institutions, experts and amateurs, but also real and virtual, tend to disappear, the ERNs seem to provide a first solution despite the issues it raises.

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