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TEHDAS’ recommendations to EU and member states to ensure EHDS sustainability

The European Union and its member states are starting to share health data. This will require long-term efforts both at national and EU level, covering all aspects of sustainability, including long-term funding.

A new report of the joint action Towards the European Health Data Space (TEHDAS) concludes that the sustainability of the European health data space (EHDS) for the secondary use of health data has several dimensions in addition to funding and financing. These include establishing a legal basis and governance, ensuring access to quality data, capacity and competence, as well as trust.

The report gives an overview of the EU funding options for the EHDS, examines examples from Finland, France and the Netherlands, discusses the sharing of costs between data holders, health data access bodies and data users, and looks at the available information on cost chargeable to users.

The report provides 38 recommendations for member states and the EU to address these different dimensions of EHDS sustainability.

The recommendations on funding include:

The Commission and member states should ensure a smooth interaction between the EHDS regulation and other legislation affecting data use, both in terms of EU-level legislation, such as the General Data Protection Regulation (GDPR) and the Data Act, as well as national-level legislation. This should be supported by an EU-funded network of future health data access bodies in member states.

Member states and the EU need to agree on the cost-sharing principles for cross-border use of health data. The EU should use varied funding instruments for EU-level work, and consider a later option for the stable maintenance of the central services.

The member states need to set up roadmaps that consider the investments in their own national systems to make the health data accessible.

The resource needs should be alleviated by producing open-source tools for the use by member states in European collaboration funded by various EU programmes.

Funding by the EU and member states is needed for many actions, such as ensuring broad stakeholder engagement to build trust and to communicate the benefits of the secondary use of health data.

TEHDAS hopes that the member states and the Commission will benefit from the recommendations when developing plans for the secondary use of health data.

This concludes the work of TEHDAS on the sustainability of secondary use of data in the EHDS.

The report has been approved by the project steering group. The European Commission gives final approval to all joint action’s deliverables.

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