Smart FOX - Enabling Citizen-Based Donation of EHR-Standardised Data for Clinical Research in Austria.

Author(s)

K Donsa, K Kreiner, D Hayn, A Rzepka, S Ovejero, M Topolnik, A Ziegl, Bernhard Pfeifer, S Neururer, S Kaltenbrunner, E Klager, K Zatloukal, B Zatloukal, T Schabetsberger, ML Garcia, N Tanjga, G Schreier

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.

Organisation(s)

Department of Biochemistry and Cell Biology, Department of Innovation and Digitalisation in Law, Department for Ethics and Law in Medicine

Journal

Studies in Health Technology and Informatics

Pages

83-87

No. of pages

5

ISSN

0926-9630

DOI

https://doi.org/10.3233/shti240351

Publication date

08-2024

Peer reviewed

Yes

Austrian Fields of Science 2012

505002 Data protection, 505003 European law

Keywords

ASJC Scopus subject areas

Health Information Management, Health Informatics, Biomedical Engineering

Portal url

https://ucrisportal.univie.ac.at/en/publications/f1b5f051-c2c9-4cdf-969a-20fa4106da5f