The Dutch healthcare system faces significant challenges, including rising costs, administrative inefficiencies, and increasing pressure on the workforce. The European Health Data Space (EHDS) offers a promising solution to support data sharing for research and innovation while preserving data privacy and sovereignty. This paper outlines a technical and organizational framework for implementing privacy-preserving data sharing in cancer research. The proposed infrastructure leverages a combination of federated learning, multi-party computation, and FAIR Data Points to enable decentralized analysis of real-world health data. Key challenges, such as balancing data utility and privacy, are addressed through governance structures, including data permit management, certification processes, and rigorous identity management. The approach also considers the difficulties in sharing high-dimensional data while maintaining both privacy and usability. By integrating standardization efforts, privacy-enhancing technologies, and robust governance models, the framework aligns with the EHDS vision for a secure, interoperable, and patient-centric data ecosystem. This paper thus contributes to advancing cancer research through responsible secondary use of health data, fostering trust among stakeholders, and enabling the development of innovative healthcare solutions while ensuring compliance with GDPR and other relevant regulations.

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Common European Data Spaces in Health Care: A Privacy-Preserving Ecosystem for Cancer Research

  • Simon Dalmolen,
  • Jos van Hillegersberg,
  • Hans Moonen,
  • Erik Cornelisse,
  • Jildau Bouwman,
  • Andre Boorsma

摘要

The Dutch healthcare system faces significant challenges, including rising costs, administrative inefficiencies, and increasing pressure on the workforce. The European Health Data Space (EHDS) offers a promising solution to support data sharing for research and innovation while preserving data privacy and sovereignty. This paper outlines a technical and organizational framework for implementing privacy-preserving data sharing in cancer research. The proposed infrastructure leverages a combination of federated learning, multi-party computation, and FAIR Data Points to enable decentralized analysis of real-world health data. Key challenges, such as balancing data utility and privacy, are addressed through governance structures, including data permit management, certification processes, and rigorous identity management. The approach also considers the difficulties in sharing high-dimensional data while maintaining both privacy and usability. By integrating standardization efforts, privacy-enhancing technologies, and robust governance models, the framework aligns with the EHDS vision for a secure, interoperable, and patient-centric data ecosystem. This paper thus contributes to advancing cancer research through responsible secondary use of health data, fostering trust among stakeholders, and enabling the development of innovative healthcare solutions while ensuring compliance with GDPR and other relevant regulations.