For the past 18 months, a joint coalition of some 35 organisations has worked to support progress made on the wording of the proposed Regulation on the European Health Data Space. On 26 February 2024, it published a synthesis of the ten observations it has made over time.
A number of weaknesses
The coalition's latest insights draw attention to a number of weaknesses that remain in the current data space documentation. The group expresses its anxieties about whether the discrepancies in the document can be rectified in the time that remains for three-way negotiations ("trilogues") among the European institutions: the Parliament, the Council, and the Commission. Certainly, substantial pressures abound for the institutions to press towards an agreement and publish the text of the Regulation prior to the upcoming European elections in June 2024.
EHTEL shares some of the concerns expressed by the coalition, and supports the coalition colleagues and their worries. For this reason, it has signed and supported the text.
But the data space champions great opportunities ...
Nevertheless, EHTEL considers that, even if the draft Regulation for the European Health Data Space is ultimately not perfect, there is a distinct need to back the proposal.
EHTEL continues to support the proposed Regulation on the European Health Data Space as a strategic initiative. Among the reasons that EHTEL does so are that it welcomes these major, pivotal aspects, and strengths, of the data space:
- The ambition of connecting the two uses of healthcare data - the primary use of data ecosystems and the secondary use of data.
- The federation that will be created among digital health innovators.
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The support that the development of innovation ecosystems will offer to the benefit of people, including the focus on people's and patients' involvement in their own health and care through initiatives like:
- The Yellow Button
- Citizen-centric data-sharing (particularly this InteropEHRate White Paper)
The years ahead
With its members, EHTEL fully commits to taking forward its support of the European Health Data Space in the months and years ahead, and through a number of major projects and initiatives: among these is the xShare project. EHTEL believes the space will make good use of both health and care data and digital technologies.
EHTEL also considers that the joining up of diverse groups of stakeholders - as in this joint coalition - to discuss, debate, plan, and implement various aspects of the European Health Data Space can only enhance and improve its application.
Read the official press release of the coalition ⤵️