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Directed data donation takes place within a new or established research context. A research context is defined here as a clinical registry or clinical trial in which regulatory approval for the use of the data is clearly defined, for example in an ethics approval.
An undirected data donation takes place in an as yet unspecified research context. The data donation is provided by patients/citizens with the intention that the data will be used in a future research context. The patients/citizens agree that the data will be used under clearly defined conditions.
Finding out whether certain factors (e.g. a biomarker) have an impact on a patient's chances of recovery currently requires time-consuming manual work and a great deal of effort in order to access the data. In this use case, colon carcinoma (a malignant tumor of the colon) is used to investigate the extent to which these efforts can be reduced by donating highly structured data. For this purpose, donated hospital data from clinical care is linked to data from the biobank of the Medical University of Graz using a quantum-safe infrastructure.
In Tyrol, a heart failure register has been set up in recent years, in which data from the telemedical care program HerzMobil is linked in real time with hospital data from the Tyrolean clinics. So far, however, the register does not contain any data from the private practice sector, which was collected after the 3-month HerzMobil phase. This use case investigates whether the donation of billing data from insurance companies for the heart failure register can provide insights that can further improve the quality of Herz Mobil.
We are exploring whether sponsors from industry and science can fund the continuation of a disease management program in the future and, in return, use anonymized data for research. These measures are intended to improve healthcare and drive innovation in telemedicine.
This use case aims to achieve technical implementation in connecting Smart FOX with other study participant recruitment services. Building on the conceptual work for various data donation channels, the objectives include demonstrating technical breakthrough in a complex value chain, compliance with the highest standards for data protection and standardization of health data.
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Wir wollen verschiedene Perspektiven kennenlernen und deine Sichtweise als Bürger:in/Patient:in ist uns dabei besonders wichtig!