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  4. A Data Space infrastructure supporting the integration of clinical data nodes and cancer registries to improve personalized medicine
 
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2025
Conference Paper
Title

A Data Space infrastructure supporting the integration of clinical data nodes and cancer registries to improve personalized medicine

Abstract
We present in this paper a reference implementation of the architecture of the European Health Data Space (EHDS) targeted to sharing and aggregating data through different value chains in a healthcare setting. The architecture includes user interfaces to diverse user groups of professions ranging from clinicians to operators of cancer registries. The work was built upon existing architectural implementations of our team, combined with a user requirements analysis carried out with the participation of different stakeholders and the pharmaceutical industry. To facilitate the rapid prototyping of our components, we have simulated the data nodes through a set of interoperable modules using synthetic data, so that we can avoid initial privacy concerns and focus our work on the development of components respecting security and data sovereignty principles. Our architecture includes a data services server acting as a Secure Processing Environment, which takes care of the aggregation of the results by sending secure execution requests to the data nodes, respecting different authorization and authentication processes. The developed components demonstrated the feasibility of the approach and the potential benefits of such architectures for the improvement of the medical care, the implementation of personalized medicine treatments and therapies, and the availability of health data to contribute to the research and development of new drugs and therapies.
Author(s)
Hamiti, Florim
Fraunhofer-Institut für Angewandte Informationstechnik FIT  
Breidenbach, Martin
Fraunhofer-Institut für Angewandte Informationstechnik FIT  
Heiba, Naguib
Fraunhofer-Institut für Angewandte Informationstechnik FIT  
Guluzade, Aynur
Fraunhofer-Institut für Angewandte Informationstechnik FIT  
Mohamad, Yehya
Fraunhofer-Institut für Angewandte Informationstechnik FIT  
Velasco, Carlos A.  
Fraunhofer-Institut für Angewandte Informationstechnik FIT  
Mainwork
ACM International Conference Proceeding Series
Funder
AstraZeneca
Conference
11th International Conference on Software Development and Technologies for Enhancing Accessibility and Fighting Info-exclusion, DSAI 2024
Open Access
DOI
10.1145/3696593.3696627
Additional link
Full text
Language
English
Fraunhofer-Institut für Angewandte Informationstechnik FIT  
Keyword(s)
  • Cancer Registries

  • Clinical Data Nodes

  • European Health Data Space (EHDS)

  • Health Data

  • International Data Spaces (IDS)

  • Patient

  • Personalized Medicine

  • Secondary Use of Health Data

  • User Interfaces

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