ERNs in action ! Back from the 4th ERN conference
The 21 and 22 November took place the 4th Conference of European Reference Networks (ERNs) at European Commission facilities in Brussels. One and a half year after their launch in Vilnius in March 2017, it was impressive to see how much has been achieved and to discuss already about the short, medium and long-term challenges ahead. With more than 400 participants representing all the stakeholders (national authorities, healthcare providers members of the ERNs, health professionals, hospital managers, patients' representatives, EU Institutions), the Conference was a great opportunity to exchange views and strengthen links between all parties, witnessing for shared commitment to RD community’s goals ERNs are working toward: improving diagnosis, care (and cure) for rare diseases (RD), and tackling inequalities across European countries.
Integration into national care systems was one of the main topics. Increasing member states representativeness and participation into ERNs, in particular through the new call for affiliated partners, is part of the solution. Appropriation of the ERN concept by national health systems is the main one. It should be translated and promoted by national RD strategies and immediately embedded in healthcare providers by interesting and committing hospital managers in order to re-orient the organisations and the funding toward a more efficient, de-fragmented, streamlined access to the best expertise for RD patients in each country.
ERNs are also been seen as producers and disseminators of best clinical practice. It will be achieved through the production of new clinical practice guidelines when needed, and through the assessment, update and adaptation (and translation) of guidelines that already exist. A dedicated call for tenders has just been launched with the aim to help ERNs in this massive task. But producing guidelines would not be enough: best practice and expertise transmission is key in improving care for RD patients wherever they live. Training (webinars) and fellowship exchange programs have already been developed by some ERNs and should be generalised. New expertise should emerge in countries less represented in networks as yet.
Making expertise travel instead of patients is one of the main foundational concepts for ERNs. It has been achieved through the Clinical patient management system (CPMS platform) – an IT solution allowing for discussing cases across borders. More than 250 patients have been already benefited from these discussions. However, financing this tele-expertise time is an issue and solutions should be found based on the Cross-border healthcare directive. Cost-saving of virtual expertise and virtual consultation for national healthcare systems should be demonstrated through proper studies, and any legal barrier based on data protection and consent issues should be overcome.
Sustainability of the ERN model was one of the hot topics in this conference. National engagement as well as public-private funding models for some activities, and without compromising ERN independence, need to be put high in the agenda in the coming months and years.
Finally, the need for the creation of a multi-stakeholder group to help set priorities, provide strategic direction and oversee implementation has been stressed. The richness of the input of this 4th ERN conference was the living proof that the views of all members of the RD community are key for driving the deep cultural change ERNs are introducing, and for managing expectations.
