Speaker
Description
The challenges of data sovereignty and AI
in the European Health Data Space (EHDS)
Talk abstract contribution to
SciDATACon Abstract ID: 61
Advancing Healthcare Research with Data, Analytics & AI Commons
Francis P. Crawley
Chair, International Data Policy Committee, CODATA
francis@codata.org
Version 3.0, 24 April 2025
The European Health Data Space (EHDS) represents a groundbreaking initiative by the European Union to establish a harmonized framework for the sharing, access, and secondary use of health data across member states. This initiative is rooted in the vision of enabling high-quality research, informed policymaking, public health innovation, and improved clinical care by creating a trustworthy, interoperable digital infrastructure for health data. At its core, the EHDS aspires to transform healthcare systems by facilitating secure, ethical, and equitable access to data, fostering collaboration across borders and sectors.
However, realizing this vision presents complex challenges. Chief among them is the need to balance the dual imperatives of openness and innovation with national data sovereignty, individual privacy rights, and ethical governance, particularly in the context of increasing reliance on artificial intelligence (AI) in healthcare. These tensions are further complicated by the uneven implementation of data protection regulations, varied interpretations of ethical standards, and differing cultural attitudes toward data sharing among EU member states.
This session will examine these intersecting issues, focusing on the governance of AI and the operationalization of data sovereignty within the EHDS. Participants will explore best practices for managing patient data responsibly, while enabling cross-border collaboration and digital innovation. Topics include the role of federated data infrastructures, privacy-preserving technologies (e.g., differential privacy and federated learning), and frameworks for trustworthy AI that comply with legal standards and uphold ethical norms. In addition to EU-specific dynamics, the session will draw comparative insights from other national and regional systems engaging with similar challenges.
A key focus will be how the FAIR (Findable, Accessible, Interoperable, Reusable) and CARE (Collective benefit, Authority to control, Responsibility, and Ethics) data principles can be applied to guide the responsible design of data ecosystems. Strategies for building public trust, ensuring participatory governance, and enabling accountability in AI-driven healthcare decision-making will be emphasized.
Ultimately, this session seeks to advance practical and inclusive approaches to health data governance that respect national sovereignty and individual rights, while also supporting the broader goals of open science, digital health innovation, and equitable healthcare. It aims to contribute to a resilient, future-ready EHDS and inspire similar efforts globally.
