A week of ERN-related events in Brussels
The week commencing 26th September saw a host of activity in Brussels, around the hot topic of European Reference Networks (ERNs), culminating in a major RD-ACTION workshop addressing key issues pertaining to virtual care provision. Earlier in the week, the Board of Members States of ERNs – the executive body overseeing the implementation and evaluation of the Networks- met to discuss key issues in this important stage of the road to ERNs (the 24 proposals submitted to the European Commission earlier this year are currently being assessed by Independent Assessment Bodies). This was followed by the final workshop of the PricewaterhouseCoopers Services Tender developing a catalogue of services and a costing model for ERNs, which identified many factors and complexities associated with costing such an innovative means of healthcare organisation.
The 28 and 29th of September were devoted to a meeting and workshop organised by the Joint Action for Rare Diseases, RD-ACTION, continuing to cement the role of rare disease Joint Actions over the last four years in helping to bring the ERN concept to fruition.
Meeting between the Board of Member States and the Applicant Network Coordinators
On the morning of Wednesday 28th, RD-ACTION invited a representative from each of the proposed ERNs to join members of the Board of MS in a ’pre-workshop’ meeting. This was the first occasion for these two essential stakeholder groups to come together in this way and discuss their most pressing issues relating to the implementation and evolution of the Networks. The meeting was attended by 14 representatives from 12 Member States and 19 Applicant Networks Coordinators (ANCs). The meeting focused discussions around two main topics:
1. Geographical membership coverage of the ERNs and means of ’affiliation’ to the Networks. The discussions clarified the rules for future membership of the Networks, and the participants agreed the importance of gaining greater clarity of the timelines and process by which MS will designate centres as ’affiliated’ partners to participate in an ERN, thus ensuring that countries (especially the smaller countries) which do not have -and are perhaps unlikely to have in the future- a member in a given ERN nonetheless have a ’hub’/’gateway’ to access and contribute to the expertise of that particular ERN.
2. Integration of ERNs with national health systems. The participants emphasised the potential for ERNs to, in time, bring about major innovation in health systems, functioning as true game changers in terms of equity of access across Europe to high quality care for patients whose conditions require a particular concentration of expertise. The challenges and opportunities on the sides of the ANCs and the Board members were shared in lively debate.
RD-ACTION Workshop
After a successful first meeting between these key stakeholders, the venue became the stage for the RD-ACTION Workshop on ’Sharing data for virtual care within the framework of ERNs’. This topic was selected because at the heart of the ERN concept is the opportunity to provide healthcare through virtual means, enabling expertise to travel as opposed to patients or physicians, where possible and appropriate. The workshop was very well attended, with over 55 participants across the two days: 21 Applicant Networks; 10 European Commission DG SANTE experts leading various aspects of the ERN work, including Mr Andrzej Rys and Enrique Terol; 10 European Patient Advocacy Groups (ePAGs); experts from RD-ACTION and several other projects with experience and expertise in the standardisation of data in the RD field; and a legal expert with many years of experience in addressing the legal challenges facing the field of eHealth, Petra Wilson.
The workshop focused on several aspects relating to the organisation and execution of ’virtual consultations’ for complex patient presentations requiring access to the pooled expertise of the ERN:
- The form such encounters might take were explored (for example a real-time gathering of experts through virtual systems, the ability to review uploaded case information in the professional’s own time through a secure platform, etc.)
- The legal issues around data protection -especially in view of the new General Data Protection Regulation- and the legal, ethical and social issues relating to consent for the sharing of data in the ERN framework
- Practical advice on the organisation and execution of efficient and effective virtual consultations, from colleagues engaged in this work at present
- Perspectives on how patients will enter/ be ’referred’ to the expertise of the ERN for virtual care
- Experiences and recommendations on the standardisation of data in the RD field, in terms of disease coding and ontologies for phenotypic (clinical) information, to explore the good practices which should be embedded in the ERNs and identify additional standards of importance to the ANCs.
The workshop ended with a switch in focus towards future RD-ACTION workshops geared towards the ERN community, with particular discussion on research opportunities (inspired by a stimulating presentation from Iiro Eerola of DG Research and Innovation) and rare disease registration. The presentations and report of the workshop will be accessible through the RD-ACTION website very soon, and work is now underway to generate specific, practical outputs relating to several of the topics above, to function as guidance for the Networks (by the Networks). The workshop achieved its policy-oriented goals, thanks to the active and enthusiastic contribution of all participants; in addition, however, the political value of these meetings was significant. Throughout the week, it was heartening to see the commitment to this cause from such key figures as Commissioner Vytenis Andriukaitis, Dr Andrzej Rys (Director of the Health systems and medical products and innovation Directorate at DG SANTE) and, as always, Enrique Terol (whose role in making the ERN concept a reality cannot be underestimated). There is a clear commitment to making this concept a success, from all stakeholder groups, and RD-ACTION will continue to deliver workshops and support the generation of guidance over the coming months.