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

Klaus Donsa; Karl Kreiner; Dieter Hayn; Angelika Rzepka; Sofia Ovejero; Michaela Topolnik; Andreas Ziegl; Bernhard Pfeifer; Sabrina Neururer; Saskia Kaltenbrunner; Elisabeth Klager; Kurt Zatloukal; Bernhard Zatloukal; Thomas Schabetsberger; Manuel L. Garcia; Nikola Tanjga; Günter Schreier

doi:10.3233/SHTI240351

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

Klaus Donsa (Author and Speaker), Karl Kreiner, Dieter Hayn, Angelika Rzepka, Sofia Ovejero, Michaela Topolnik, Andreas Ziegl, Bernhard Pfeifer, Sabrina Neururer, Saskia Kaltenbrunner, Elisabeth Klager, Kurt Zatloukal, Bernhard Zatloukal, Thomas Schabetsberger, Manuel L. Garcia, Nikola Tanjga, Günter Schreier

Digital Health Information Systems

Research output: Chapter in Book or Conference Proceedings › Conference Proceedings with Oral Presentation › peer-review

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.

Original language	English
Title of host publication	Digital Health and Informatics Innovations for Sustainable Health Care Systems
Subtitle of host publication	Proceedings of MIE 2024
Editors	John Mantas, Arie Hasman, George Demiris, Kaija Saranto, Michael Marschollek, Theodoros N. Arvanitis, Ivana Ognjanovi, Arriel Benis, Parisis Gallos, Emmanouil Zoulias, Elisavet Andrikopoulo
Publisher	IOS Press BV
Chapter	S2.5 - SUSTAINABLE HEALTH CARE SYSTEMS 4
Pages	83-87
Number of pages	5
Volume	316
ISBN (Electronic)	978-1-64368-533-5
DOIs	https://doi.org/10.3233/SHTI240351
Publication status	Published - 27 Aug 2024
Event	Medical Informatics Europe Conference: Digital Health and Informatics Innovations for Sustainable Health Care Systems - Athens, Greece Duration: 25 Aug 2024 → 29 Aug 2024 Conference number: 34 https://mie2024.org/

Publication series

Name	Studies in Health Technology and Informatics
Publisher	IOS Press
Volume	316
ISSN (Print)	0926-9630
ISSN (Electronic)	1879-8365

Conference

Conference	Medical Informatics Europe Conference
Abbreviated title	MIE 2024
Country/Territory	Greece
City	Athens
Period	25/08/24 → 29/08/24
Internet address	https://mie2024.org/

Research Field

Exploration of Digital Health

Keywords

Citizen Science
Clinical Research
Data Donation
Electronic Health Records
Privacy Preservation
Real-World Data

Access to Document

10.3233/SHTI240351Licence: CC BY-NC

Cite this

Donsa, K., Kreiner, K., Hayn, D., Rzepka, A., Ovejero, S., Topolnik, M., Ziegl, A., Pfeifer, B., Neururer, S., Kaltenbrunner, S., Klager, E., Zatloukal, K., Zatloukal, B., Schabetsberger, T., Garcia, M. L., Tanjga, N., & Schreier, G. (2024). Smart FOX - Enabling Citizen-Based Donation of EHR-Standardised Data for Clinical Research in Austria. In J. Mantas, A. Hasman, G. Demiris, K. Saranto, M. Marschollek, T. N. Arvanitis, I. Ognjanovi, A. Benis, P. Gallos, E. Zoulias, & E. Andrikopoulo (Eds.), Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024 (Vol. 316, pp. 83-87). (Studies in Health Technology and Informatics; Vol. 316). IOS Press BV. https://doi.org/10.3233/SHTI240351

Donsa, Klaus ; Kreiner, Karl ; Hayn, Dieter et al. / Smart FOX - Enabling Citizen-Based Donation of EHR-Standardised Data for Clinical Research in Austria. Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. editor / John Mantas ; Arie Hasman ; George Demiris ; Kaija Saranto ; Michael Marschollek ; Theodoros N. Arvanitis ; Ivana Ognjanovi ; Arriel Benis ; Parisis Gallos ; Emmanouil Zoulias ; Elisavet Andrikopoulo. Vol. 316 IOS Press BV, 2024. pp. 83-87 (Studies in Health Technology and Informatics).

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title = "Smart FOX - Enabling Citizen-Based Donation of EHR-Standardised Data for Clinical Research in Austria",

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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Donsa, K , Kreiner, K , Hayn, D , Rzepka, A, Ovejero, S, Topolnik, M, Ziegl, A, Pfeifer, B, Neururer, S, Kaltenbrunner, S, Klager, E, Zatloukal, K, Zatloukal, B, Schabetsberger, T, Garcia, ML, Tanjga, N & Schreier, G 2024, Smart FOX - Enabling Citizen-Based Donation of EHR-Standardised Data for Clinical Research in Austria. in J Mantas, A Hasman, G Demiris, K Saranto, M Marschollek, TN Arvanitis, I Ognjanovi, A Benis, P Gallos, E Zoulias & E Andrikopoulo (eds), Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. vol. 316, Studies in Health Technology and Informatics, vol. 316, IOS Press BV, pp. 83-87, Medical Informatics Europe Conference, Athens, Greece, 25/08/24. https://doi.org/10.3233/SHTI240351

Smart FOX - Enabling Citizen-Based Donation of EHR-Standardised Data for Clinical Research in Austria. / Donsa, Klaus (Author and Speaker); Kreiner, Karl ; Hayn, Dieter et al.
Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. ed. / John Mantas; Arie Hasman; George Demiris; Kaija Saranto; Michael Marschollek; Theodoros N. Arvanitis; Ivana Ognjanovi; Arriel Benis; Parisis Gallos; Emmanouil Zoulias; Elisavet Andrikopoulo. Vol. 316 IOS Press BV, 2024. p. 83-87 (Studies in Health Technology and Informatics; Vol. 316).

Research output: Chapter in Book or Conference Proceedings › Conference Proceedings with Oral Presentation › peer-review

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AU - Hayn, Dieter

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AU - Ovejero, Sofia

AU - Topolnik, Michaela

AU - Ziegl, Andreas

AU - Pfeifer, Bernhard

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AU - Kaltenbrunner, Saskia

AU - Klager, Elisabeth

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AU - Zatloukal, Bernhard

AU - Schabetsberger, Thomas

AU - Garcia, Manuel L.

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A2 - Hasman, Arie

A2 - Demiris, George

A2 - Saranto, Kaija

A2 - Marschollek, Michael

A2 - Arvanitis, Theodoros N.

A2 - Ognjanovi, Ivana

A2 - Benis, Arriel

A2 - Gallos, Parisis

A2 - Zoulias, Emmanouil

A2 - Andrikopoulo, Elisavet

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PY - 2024/8/27

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N2 - 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.

AB - 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.

KW - Citizen Science

KW - Clinical Research

KW - Data Donation

KW - Electronic Health Records

KW - Privacy Preservation

KW - Real-World Data

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PB - IOS Press BV

T2 - Medical Informatics Europe Conference

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ER -

Donsa K , Kreiner K , Hayn D , Rzepka A, Ovejero S, Topolnik M et al. Smart FOX - Enabling Citizen-Based Donation of EHR-Standardised Data for Clinical Research in Austria. In Mantas J, Hasman A, Demiris G, Saranto K, Marschollek M, Arvanitis TN, Ognjanovi I, Benis A, Gallos P, Zoulias E, Andrikopoulo E, editors, Digital Health and Informatics Innovations for Sustainable Health Care Systems: Proceedings of MIE 2024. Vol. 316. IOS Press BV. 2024. p. 83-87. (Studies in Health Technology and Informatics). doi: 10.3233/SHTI240351

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

Abstract

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Keywords

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