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From Hospitals to Researchers: A Data-Trustee Infrastructure to Search and Use FHIR-Data for Retrospective Medical Research

Authors:
Carolin Poschen
Joscha Grüger
Britta Berens
Helene Christ
Lukas Meyer
Konstantin Knorr

Keywords: medical research; data-trustee infrastructure; data access; privacy; security.

Abstract:
The secondary use of clinical data is crucial for advancing medical research, yet it remains challenged by data fragmentation, privacy concerns, and limited availability. This paper presents a data-trustee infrastructure designed to enable secure, privacy-preserving access to retrospective medical data stored in Hospital Information Systems (HIS). The infrastructure leverages Fast Healthcare Interoperability Resources (FHIR) standards to ensure interoperability and employs a modular pipeline. The pipeline extracts, preprocesses, encrypts, and annotates the data in the hospital and then stores data in a trustee repository. A central component—the Study Specification Board—facilitates ethical and formalized study planning, while a privacy-preserving, two-phase search mechanism allows researchers to retrieve relevant data without exposing sensitive information. A demonstrator system has been implemented and successfully integrated with an HIS, confirming the feasibility and practical applicability of the approach. This work represents a significant step toward operationalizing secure clinical data sharing aligned with EU-GDPR and the goals of the European Health Data Space.

Pages: 23 to 28

Copyright: Copyright (c) IARIA, 2025

Publication date: October 26, 2025

Published in: conference

ISSN: 2519-8491

ISBN: 978-1-68558-312-5

Location: Barcelona, Spain

Dates: from October 26, 2025 to October 30, 2025