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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
  • *Corresponding author for this work

Research output: Chapter in Book/Report/Conference proceedingConference contributionAcademicpeer-review

Abstract

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.

Original languageEnglish
Title of host publicationBridging Digital Sourcing, Platforms, and Ecosystems
Subtitle of host publication16th International Workshop, DSPE 2025, Obergurgl, Austria, March 4–7, 2025, Revised Selected Papers
EditorsMaximilian Schreieck, Ilan Oshri, Julia Kotlarsky, Oliver Krancher
Place of PublicationCham
PublisherSpringer
Pages78-98
Number of pages21
ISBN (Electronic)978-3-032-04512-6
ISBN (Print)978-3-032-04511-9
DOIs
Publication statusPublished - 2026
Event16th International Workshop on Digital Sourcing, Platforms and Ecosystems, DSPE 2025 - Obergurgl, Austria
Duration: 4 Mar 20257 Mar 2025
Conference number: 16

Publication series

NameLecture Notes in Business Information Processing
PublisherSpringer
Volume563
ISSN (Print)1865-1348
ISSN (Electronic)1865-1356

Conference

Conference16th International Workshop on Digital Sourcing, Platforms and Ecosystems, DSPE 2025
Abbreviated titleDSPE 2025
Country/TerritoryAustria
CityObergurgl
Period4/03/257/03/25

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

  1. SDG 3 - Good Health and Well-being
    SDG 3 Good Health and Well-being

Keywords

  • NLA
  • Data sovereignty
  • EHDS
  • European health data space
  • FAIR data points
  • Privacy-preserving technologies
  • Data governance

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