Informace o publikaci
Opinion on Application of the ERN model in European cross border healthcare cooperation outside the rare diseases area
| Autoři | |
|---|---|
| Rok publikování | 2018 |
| Druh | Účelové publikace |
| Fakulta / Pracoviště MU | |
| Citace | |
| Popis | Application of the ERN model in European cross - border healthcare cooperation 4 SUMMARY European Reference Networks (ERNs) were created by the Directive on the Application of Patients’ 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 a sked 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 M ember S tates. 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 exist ing 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. |