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TEHDAS identifies needs for recommendations on cross-border collaboration between health data access bodies

In order to explore best practices in health data sharing in EU member states, TEHDAS held a workshop to discuss the changes brought about by the European health data space. Based on the workshop TEHDAS identified the different needs for recommendations on cross-border collaboration between health data access bodies.

A recent report by the joint action Towards the European Health Data Space (TEHDAS) summarises current best practices and pain points of governance procedures for cross-border access to health data in four member states in the light of the upcoming European health data space (EHDS). The report is based on a workshop organised by TEHDAS in March 2023.

The EHDS is expected to bring about many positive changes to the cross-border use of health data for secondary purposes such as research, innovation and policymaking. These include effective governance – the legal framework and rules – set to protect health data and quicker procedures for granting access to data and making it available.

The workshop identified the following needs for recommendations:

  • Provide guidelines to member states for establishing the health data access bodies and dedicating significant human, technical and financial resources, given the multitude of tasks assigned to the bodies. Under the Commission’s EHDS proposal, each member state will create one or more health data access bodies to enable access to health data for secondary purposes.

  • The role of the national coordinator of the health data access bodies in member states needs to be more clearly defined in cases where there are several bodies involved. This could be done by specifying the tasks of the coordinator in the legislation (or in a recital) or in Commission guidelines.

  • Refine the concept of mutual recognition. The EHDS proposal includes the intention that the bodies for access to health data will collaborate but doesn’t specify how. The article of the legal proposal concerning mutual recognition will need to be defined in order for it to work in practice.

Currently, the diversity of health data management in EU member states hinders cross-border data use. TEHDAS has already surveyed a range of data holders to understand the processes for accessing health data in Europe.

TEHDAS will issue final recommendations on cross-border data access procedures in late summer 2023.

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