Data Steward für interoperables Management klinischer Daten innerhalb der Mission Cancer an der JKU

Personalized cancer medicine offers great potential for improving prevention, diagnosis and therapy. However, its implementation is associated with considerable challenges, particularly in the area of data management. The data required for this - such as molecular data, imaging data, routine clinical data, patient-reported outcomes (PROMs, PREMs) - are documented in different systems, in different formats and qualities. They are often inadequately documented, fragmented or inaccessible. The increasing volume and complexity of the data makes systematic use even more difficult. In addition, there is a lack of interoperability between data sources within and between institutions. There is a growing need for high-quality, standardized data sets for modern analysis procedures, especially for AI-based methods, as well as for national and European research initiatives (e.g. ACCN, AHDRH, UNCAN.eu).
This project addresses these challenges by establishing and institutionally embedding the role of a data steward for the Faculty of Medicine at the Johannes Kepler University Linz, where coordinated research data management is currently being established. In addition to the existing CCCs in Graz, Vienna and Innsbruck, a further CCC is planned in Linz. Here, rapidly growing molecular data (“multi-omics”) from patients will be mapped together with individual therapy and outcome information in an increasingly complex ML/AI-based expert system. This will enable future patients to find a more and more suitable “digital twin” with their personal molecular profile, for which increasingly reliable therapy recommendations can be made. The data steward will support the development of the CCCL and the expert system, acting as a central interface between research, clinical care and IT and supporting the structured, quality-assured and long-term utilization of the aforementioned data.
The aim is to transfer isolated, heterogeneous data sets from different sources of varying quality into an integrated, standardized data structure based on the FAIR principles and international standards in order to make them optimally usable for research, clinical applications and innovative technologies. Ethical and regulatory requirements must also be taken into account. The introduction of a data steward for the JKU Faculty of Medicine in the field of cancer research is therefore not only a response to the growing need for data management, but also an essential component of the digital and scientific strategy to improve cross-site data integration and use. This process is to be started with the help of this project, whereby training, further education and the establishment of an Austria-wide network of data stewards to promote cross-institutional cooperation in data-driven oncological research is an integral part. At the end of the project, it is planned to take on the data steward as full-time library staff in order to ensure continuity and sustainability.