European Health Data Space: MEPs and health stakeholders discuss challenges and opportunities

The European Commission’s proposal for the EHDS would make it possible to share and re-use health data in the European Union, both for the primary use of improved quality of healthcare to patients, or secondary uses such as research, innovation, or to aid policy-making for public health.

The event’s host, MEP István Ujhelyi, outlined that the EHDS could be a huge step forward in providing better healthcare for patients and put the EU at the global forefront of health data. However, there is a long and difficult road with many challenges ahead. MEPs Juozas Olekas, Victor Negrescu, Sirpa Pietikäinen, Alex Agius Saliba, Tomislav Sokol, and Petar Vitanov joined the debate with a broad range of stakeholders.

MEP Sokol, co-rapporteur on the EHDS for the ENVI committee, said that strong financing and a realistic timetable are required to fully implement the ambitions of the EHDS. He also highlighted the need for coherence with other EU legislation, such as GDPR.

Health stakeholders called for high standards of data protection and security, especially concerning the secondary use of data, and patients should be informed about who has had access to their data and why. They also highlighted the need for clarification of the responsibilities of healthcare professionals, payers and other bodies, such as hospitals, and underlined that this should not be an unsustainable burden.

The European Health Union Network initiative is coordinated by the office of MEP István Ujhelyi and the Standing Committee of European Doctors (CPME) with the support of the International Association of Mutual Benefit Societies (AIM), European Patients' Forum (EPF) and the European Hospital and Healthcare Federation (HOPE). The network held its first meeting in June 2022, discussing the European Health Union as a whole, and further meetings are foreseen later this year.