Second Meeting of the ERN Coordinators Group

Following the 1st meeting of the ERN Board of Coordinators on 26 April 2017, where there was the formalization of the Board of Coordinators and the discussion on the creation of Working Groups and an initial discussion on the governance was initiated. A second meeting was held on 21 June in Brussels. On behalf of ERN GUARD-HEART, Arthur Wilde, the Coordinator of the Network, participated at this meeting.

Governance of the ERN Board of Coordinators: A brief discussion has been conducted regarding the need of coordination, following an informal meeting that was held in Newcastle on 1 June 2017. The ERN Board of Coordinators agreed to identify a Chair and Vice-Chair of the ERN Coordinators Group. The role of the Chair and Vice-Chair would be to:

  • liaise with all ERN Coordinators to gather input for definition of the agenda of the ERN Board of Coordinators
  • collect feedback from Working Group Leaders to circulate updates and prepare summaries for the European Commission on progress of work
  • chair the ERN Board of Coordinators meetings
  • develop meeting reports and consensus documents
  • represent the ERNs externally
  • be the contact point for the European Commission with regards to the ERNs.

Both Chair and Vice-Chairs are elected among the 24 ERNs coordinators for a mandate of one year. The role is merely of coordination. No decisions can be taken without prior consultation and agreement with all ERN Coordinators. Decisions are taken by consensus. Maurizio Scarpa, Coordinator of MetabERN, was nominated unanimously to be the first Elected Chairman of the ERN Board of Coordinators. Maurizio Scarpa did accept the mandate and did act as Chair for the meeting. The mandate will last one year, starting June 21 2017. The Vice-Chair will be proposed shortly by the Chair and voted on by the Board.

Organization of ERN Working Groups: On the occasion of the 1st ERN Board of Coordinators meeting, the setup of 7 working groups was agreed upon. The organization of these working groups was discussed during the 2nd meeting of the ERN Board of Coordinators and the following was proposed:

  1. IT and data sharing; Chair: Ruth Landestein, ERN PaedCan
  1. Research. Chair; Eduardo Lopez Granados, ERN TRANSPLANT-CHILD
  1. Knowledge generation. Chair; Paolo Casali, ERN EURACAN
  1. Data Protection, ethics, informed consent; Chair: Nicoline Hoogerbrugge, ERN GENTURIS
  1. Cross-border healthcare and business continuity; Chair: Holm Grässner, ERN-RND
  1. Monitoring, Assessment, quality improvement; Chair: Christopher Chapple, ERN eUROGEN

ERN GUARD-HEART will participate in the working groups Research and Cross-border healthcare and business continuity (Brexit). The working groups will identify a list of topics to discuss and prioritize. Dr. Enrique Terol, the Project Officer from the European Commission, will be regularly informed in order to optimize the impact of the activities of the working groups on the ERN management and planning. Each ERN can participate to a maximum of three working groups. Although the European Commission allows ERNs to select their best experts to participate in the working groups, the Coordinator of each ERN remains responsible.

Connecting Europe Facility TELECOM 2017 Calls for Proposals: On 6 May 2017, the Innovation and Networks Executive Agency (INEA) and European Commission launched the Connecting Europe Facility (CEF) Telecom call for 2017. The call makes funding available to stimulate and support the deployment of European Digital Service Infrastructures (DSIs). Within the eHealth area, the call makes €3 million available for facilitating the connection between members of ERNs by ensuring adequate and efficient use of the ERN core eHealth services (i.e., IT Collaborative Platform and the Clinical Patient Management System) by members of the ERNs. The maximum amount of funding for each proposal is €125.000,- for a period of one year. The funding may be used for the establishment of an IT technical helpdesk, training in ERN eHealth services, purchase of hardware and/or software necessary for the implementation of the ERN eHealth services in an ERN member HCP. Interested applicants can submit proposals at the latest by 21 September 2017.

The Coordinators found the INEA proposal a great opportunity to tune up the activity of ERNs on the Clinical Patient Management System (CPMS) and the IT platform. It was unanimously decided by to apply with similar proposals aimed at hiring personnel that is able to introduce and manage the new IT systems (CPMS, IT platform, and WebEx) to support implementation but also improvements and adaptions specific for each ERN. Thus a team of ERN-IT tool administrators will be created amongst ERNs able to optimize the application of the IT systems for the daily activity of the ERN.

Next Call to Join Existing ERNs: The call for new full Members to join existing ERNs will be announced in December, open in March 2018 and close in June 2018. There was a lot of discussion about the increased workload this could put on the ERNs. It was also communicated that new Members could be defined as Affiliated Members, Associated Members, or National Coordination Hub Members. There was discussion about the Affiliated Partners as these was some confusion about this term. The Board of Member Stats (BoMS) has issued a paper in 2016 which explains this term (paper). Only Member States can designate Affiliated Partners. However, it might be useful for individual ERNs to reflect on which Healthcare Providers from which Member States they wish to see join their ERN. The Affiliated Partner designation process (3 types: Associated Centres, Collaborative Centres, or Coordination Hubs) is a competence of the Member States and is not related at all with the next call for new Members. The opinion about the opportunity to launch a new call for full membership has been opposed by several Coordinators, worried that this might be too early and complicating the initial organization of the ENRs at this stage. The same process will be followed, i.e., the Coordinating team will need to check that the HCP applicants meet required thresholds and submit the application forms and supporting documentation for them. This will be a very heavy workload, which some Coordinators expressed concern about not having sufficient resources to cope. However, other Coordinators welcomed this call as it gave them the chance to include HCPs that missed the first call. It has been decided to create a task force to liaise with the BoMS. This task force will be led by Maurizio Scarpa. Finally it was unanimously agreed that the European Commission and the BoMS should stick to the rules that were decided for the initial call.

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