European Reference Networks (ERNs) were created by the Directive on the Application of Patientsí Rights in Cross-Border Healthcare. They offer a means by which patients with rare and complex diseases can gain access to highly specialised knowledge from across the European Union. The Expert Panel has been asked to advise on areas that can benefit most from the ERN model, options for the new networks in the longer term and the roles that they might assume, and how best national health systems could integrate networks into their national frameworks.
ERNs are still a very new concept, having been launched in March 2017. So far, 24 have been established, bringing together over 300 hospitals from 26 Member States. Given the short time that they have been operating, the Expert Panel concluded that it was premature to draw any conclusions on their effectiveness. Instead, it sought to understand how other networks with similar goals have operated within member states and the lessons that have been learned, coupled with interviews with two of the coordinators of existing ERNs.
The Expert Panel concluded that, while ERNs have considerable potential to improve the care of patients with rare diseases across the EU, both through advice on the management of individual patients, as well as through collaboration on research and development of guidelines, it is not yet possible to ascertain the extent to which these goals will be achieved. The Expert Panel also identified several issues which, even at this stage, appeared to need to be addressed, including long-term financial sustainability and the implementation of effective IT systems.
Turning to the specific questions asked of the Expert Panel, we firstly concluded that the current criteria for establishing a ERN, as a means of improving the management of patients with rare and complex diseases, was appropriate. The ERN concept does not address other issues raised for our consideration, such as remote areas and border regions, or the development of new medicines or interventions, for which there are alternative and more appropriate mechanisms. We were also asked about the scope to extend the scope of ERNs to other areas such as the care of people who are homeless or emergency situations. In both cases, we believe that there are better alternative mechanisms to achieve the intended goals. Secondly, we examined the scope of the ERNs, and in particular their relationship with research and guideline development. Given the current state of implementation, it is not possible to come to a definitive conclusion, but we were persuaded by the arguments that there is considerable scope for incorporating these additional roles beyond the immediate objective of providing advice on individual patients. This will, however, require dedicated resources, some of which will have to come from other sources. Thirdly, while reinforcing the importance of ERN is to link with national health systems, the diversity of systems within Member States makes it impossible to provide detailed guidelines for how this can best be made to work. This is another area where it will be important to monitor the implementation of the existing ERNs and disseminate the lessons that arise from their experiences.