AI Article Synopsis
- Access to healthcare data for research is limited due to privacy and business issues, which affects the ability to analyze patient pathways effectively.
- The Smart FOX project aims to create methods and tools that allow patients to donate their health data voluntarily for research, building on Austria's Electronic Health Record system (ELGA).
- Funded by the Austrian Research Promotion Agency, Smart FOX involves various stakeholders to develop governance frameworks and infrastructure, ultimately enhancing clinical research and preparing Austria for the European Health Data Space.
Article Abstract
Access to healthcare data for secondary use in clinical research is often restricted due to privacy concerns or business interests, hindering comprehensive analysis across patient pathways. The Smart FOX project seeks to address this challenge by developing concepts, methods, and tools to facilitate citizen/patient-driven donations of health data for clinical research. Leveraging the groundwork, laid by the national Electronic Health Record implementation in Austria (called ELGA), Smart FOX aims to harness structured datasets from ELGA for research purposes through an opt-in approach. With funding secured from the Austrian Research Promotion Agency, the project embarks on innovative solutions encompassing governance frameworks, community engagement, and technical infrastructure. The Smart FOX consortium, comprising key stakeholders across various healthcare-associated domains, will evaluate these efforts through demonstrators focusing on clinical registries, patient-generated data, and recruitment services. The project targets to accompany the development of future data donation infrastructure while ultimately advancing clinical research efficiency and bolstering Austria's preparedness for the European Health Data Space. This paper presents the first systematic evaluation of the technical concept and proposal for the federated system architecture of the Austrian Health Data Donation Space, which is the socio-technical goal of Smart FOX.
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| http://dx.doi.org/10.3233/SHTI240351 | DOI Listing |
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