07.05.2018 National policy – participation in international networks
International. In order to remain involved internationally in research, diagnosis, treatment and management of rare diseases, Swiss centres of excellence rely on international partnerships. A new "International Networking" subproject in the context of the National Rare Disease Policy has been developed to help provide Swiss centres an anchor for their international integration.
On 9 March 2017, the first 24 European Reference Networks (ERNs) for rare diseases were formally launched in Vilnius. More than 300 hospitals and over 900 highly specialised teams are participating in these networks, opening a new era of EU-wide cooperation in the area of rare diseases. The aim is to help physicians and researchers to exchange data and expertise across borders in the EU, and to facilitate patients’ access to specialised diagnosis and treatment of highly complex diseases.
The ERNs were created on the basis of the EU Directive on the application of patients’ rights in cross-border health care (2011/24/EU). Based on delegated legislative acts, the EU Commission has laid down the criteria for recognition of the ERNs: they must regroup at least 10 service providers from no less than 8 member states. Each institution must have been previously
Unfortunately, it is currently impossible for competence centres from non-EU countries such as Switzerland to partici-pate formally as partners in the Euro-pean Reference Networks.
Switzerland seeks a connection
Unfortunately, it is currently impossible for competence centres from non-EU countries such as Switzerland to partici-pate formally as partners in the Euro-pean Reference Networks. Specialised Swiss centres that already have regular international contacts are following developments with great interest – but also with concern, as shown by the number of interventions at various events during the past year. Service providers and patient representatives fear that Switzerland will no more be involved in European developments, and they expect the Swiss Confederation to act.
New "International Networking" subproject
To address these difficulties, the two responsible federal agenicies, the Federal Office of Public Health FOPH and the State Secretariat for Education, Research and Innovation SERI, have set up a working group. Its purpose is to find ways to facilitate the involvement of Swiss partners in international and European collaborations in the context of the National Rare Disease Policy.
Key stakeholders such as kosek, ProRaris, Orphanet and the Swiss Clinical Trial Organisation are also involved in the subproject. As a basis for analysing the situation and assessing the needs, a survey was first conducted among specialised institutions and experts in Switzerland. A second patient organisation survey is planned for spring 2018.
The working group will then use the findings of the surveys in a targeted manner in order to gather better information on access to transnational networks (in Europe and elsewhere), and try to establish further contacts at an intergovernmental level. Relevant information will be provided to stakeholders in a suitable form. However, given the lack of legal basis for Switzerland in relation to EU mechanisms in the field of health, the hopes for formal access should not be set too high.
Swiss research and health care institutions as well as patient organisations will therefore be even more dependent on developing and maintaining innovative forms of collaboration with European and international partners.
Ljubiša Stojanovic´, Division of International Affairs, firstname.lastname@example.org