The eHealth Governance Initiative is working to establish a governance structure for eHealth within Europe in order to ensure continuity of healthcare both at home and across borders. It is achieving this through the development of strategies, priorities, recommendations and guidelines designed to deliver eHealth in Europe in a co-ordinated way. This work involves all stakeholders but especially patients and healthcare professionals.

The Initiative seeks a strong coordinated political leadership and the integration of eHealth into national health policies. It achieves this through its links to the Article 14 eHealth Network that brings together national authorities responsible for eHealth on a voluntary basis to work on common orientations in this area and to promote an interoperable and sustainable eHealth implementation across Europe.

The eHealth Network was established by Article 14(2) of Directive 2011/24/EU and it was considered desirable, in order to achieve coordination, coherence and consistency and to avoid duplication, that the eHealth Governance Initiative should operate within the framework of the Network and the objectives assigned to it.

Rare diseases are seen as a special use case for this joint action. We have presented the key drivers of the RD community :

  • few patients per disease but also few experts
  • lifetime affection, travelling patients
  • european expertise networks for RD being developped
  • networks needs tools to operate (incl. data sharing, legal framework, interoperable consent)

The presentation is available in the documentation area.