Secondary use of health data in practice: lessons learnt from an interdisciplinary neuro-oncological case study

Description

The secondary use of health data holds transformative potential for clinical research, yet in practice, it is frequently hindered by a complex web of legal, technical, and organisational challenges. This presentation shares practical insights from TumorScope, an interdisciplinary research initiative focused on building a secure, multimodal data environment for glioblastoma research. Our experience illustrates the friction between regulatory ambition and operational reality in leveraging imaging, genetic, tissue, and clinical data for research.We outline recurring barriers, including fragmented data infrastructures and restrictive interpretations of legal frameworks such as the General Data Protection Regulation (GDPR), as well as their impact on data access and project feasibility. We also examine the evolving role of the European Health Data Space (EHDS) as a potential enabler, noting that its success will hinge on implementation clarity and institutional capacity.

Period	3 Feb 2026
Event title	EUCROF Conference
Event type	Conference
Location	Amsterdam, NetherlandsShow on map
Degree of Recognition	International