Towards Distributed Healthcare Systems – Virtual Data Pooling Between Cancer Registries as Backbone of Care and Research

IEEE/ACS International Conference on Computer Systems and Applications (AICCSA), vol. 228, pp. 1–8

Abstract

German cancer registries offer a systematic approach for the collection, storage, and management of data on patients with cancer and related diseases. Much hope in research and healthcare in general is depending on such register-based analyses in order to comprehensively consider the features of a highly diverse population. Next to the data collection the cancer registries are responsible for data protection. To fulfill legal regulations, access to data has to be controlled in a strict way leading to sometimes bureaucratic and slow processes. The situation is especially complicated in Germany, since cancer data is distributed over numerous federal cancer registries. If a nationwide data evaluation is conducted a research team has to negotiate a separate contract with each cancer registry.In a joint work in progress effort of cancer registries, technical, medical, and economical experts we propose a different solution for cooperative data processing. Our approach aims for combining data in a virtual pool based on the selection criteria of individual requests from researchers. To achieve our goal, we adapt the Fraunhofer Medical Data Space as enabling technology. The architecture we propose will allow us to pool data of multiple partners regulated by data access policies. In doing so, each of the data sources can introduce its own rules and specifications on how data is used. Additionally, we add a digital consent management that will allow individual patients to decide how their data is used. Finally, we show the high potential of the cooperative analysis of distributed cancer data supported by the proposed solution in our approach.

Authors 10

1. Arno Appenzeller

   Karlsruhe Institute of Technology

   Affiliation as printed

   Karlsruhe Institute of Technology, Karlsruhe, Germany

2. Sebastian Bartholomäus
   Affiliation as printed

   Krebsregister North Rhine-Westphalia, Bochum, Germany

3. Rüdiger Breitschwerdt

   Wilhelm Büchner Hochschule

   Affiliation as printed

   Wilhelm Büchner Hochschule, Darmstadt, Germany

4. Carsten Claussen

   Fraunhofer Institute for Translational Medicine and Pharmacology

   Affiliation as printed

   Fraunhofer ITMP, Hamburg, Germany

5. Sandra Geisler Aachen Fraunhofer FIT

   Fraunhofer Institute for Applied Information Technology · RWTH Aachen University

   Affiliation as printed

   Fraunhofer FIT, RWTH Aachen University, Aachen, Germany

6. Tobias Hartz
   Affiliation as printed

   Clinical Cancer Registry Lower Saxony, Hannover, Germany

7. Philipp Kachel
   Affiliation as printed

   Cancer Registry of Rhineland-Palatinate, Mainz, Germany

8. Erik Krempel

   Fraunhofer Institute of Optronics, System Technologies and Image Exploitation

   Affiliation as printed

   Fraunhofer IOSB, Karlsruhe, Germany

9. Sebastian Robert

   Rosenheim Technical University of Applied Sciences

   Affiliation as printed

   Technical University of Applied Sciences Rosenheim, Rosenheim, Germany

10. Sylke Ruth Zeißig
    Affiliation as printed

    Cancer Registry of Rhineland-Palatinate, Mainz, Germany