Cancer registries offer a systematic approach for the collection, storage, and management of data on persons 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. A research team has to negotiate a separate contract with each cancer registry, if a nationwide data evaluation has to be performed.In a joint 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.
Transparent decisions and its documentation of breast cancer patients' therapy are getting more important especially since modern therapeutic approaches favor personalized forms of treatment. The medical decisions for a treatment are very complex, because there are rules and different options for each patient. To support the decision process, we analyzed the current decision rules and implemented them in a prototype of a rule-based expert system. Thus, this system shall support the quality assurance regarding transparent documentation of individualized therapeutic decisions. For evaluating the system, we used data from a state tumor center and compared the decisions suggested by our system with expert ones. The system and the expert approach will be compared with each other as well as the differences in the treatment decisions. The first preliminary results show us that the human factor-like must be considered by creating a decision support system. The prototype delivers first results, which are restricted, but the results are promising for further developments.
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