NeuroCOV Workshop Brings Together Leading Experts to Tackle the Challenges and Opportunities of the European Health Data Space (EHDS)

Berlin, Germany - 30 May 2024 The recent approval of the European Health Data Space (EHDS) by the European Parliament at the end of April marked a significant milestone for the European health domain. The EHDS is bound to transform healthcare delivery, research, and innovation activities across the EU, driven by a clear vision: to increase citizens’ control over (and trans-border access to) electronic health records, improve coordination among European countries, and enhance health crisis preparedness. However, its implementation raises critical questions: What role can the scientific research community play in preparing for the EHDS? What actions are necessary for European countries to ensure its effective implementation? What challenges remain unaddressed in the regulation's consolidated text?

To address these questions and set the agenda for ongoing public scrutiny of the proposed regulation, the consortium of the EU-funded NeuroCOV research project successfully held a workshop titled "The European Health Data Space: Forecasting Technoscientific, Ethical, and Social Challenges in Implementation" yesterday at the Langenbeck-Virchow-Haus in Berlin, Germany. This pivotal event brought together policymakers, researchers, and healthcare providers, taking a significant first step for the collective reflection on the EHDS and the future of the European health ecosystem.

The workshop began with an overview of the policy process and the ‘Trilogue’ negotiations following the Commission’s Proposal in 2022. Mélodie Bernaux from the EC and Katarína Kutajová from the EU Parliament outlined the key issues at stake in the policy debates concerning the EHDS. Next, key stakeholders in the health domain shared their perspectives on the challenges and opportunities of aligning current health research and healthcare practices – from data sharing to machine learning – with the EHDS standards and regulatory requirements. Concluding the workshop, discussions focused on providing normative models – from governance to consent – that could sustain the socially robust implementation of the EHDS.

The participants highlighted the crucial role that the ‘thought collective’ of key players in the health domain can play in addressing the scientific, ethical, political, and social implications of creating a unified European health data space. They called for ongoing discussions and continuous public scrutiny of the EHDS to ensure transparency, accountability, and alignment with stakeholder needs and societal values. The key insights and outcomes from this successful workshop will be shared with the public by publishing a position paper later this year.

For further information, please visit the project website and contact:

Dr. Luca Marelli
Assistant Professor (RTD-B, MED/02), Ethics and Governance of Health Research
University of Milan
luca.marelli@unimi.it

The in-person participants of the NeuroCOV workshop on the EHDS in Berlin, Germany.