A guide to sharing open healthcare data under the General Data Protection Regulation

Jip W T M de Kok; Miguel Á Armengol de la Hoz; Ymke de Jong; Véronique Brokke; Paul W G Elbers; Patrick Thoral; Alejandro Castillejo; Tomás Trenor; Jose M Castellano; Alberto E Bronchalo; Tobias M Merz; Martin Faltys; Collaborator group; Iwan C C van der Horst; Minnan Xu; Leo Anthony Celi; Bas C T van Bussel; Xavier Borrat

doi:10.1038/s41597-023-02256-2

A guide to sharing open healthcare data under the General Data Protection Regulation

Jip W T M de Kok, Miguel Á Armengol de la Hoz, Ymke de Jong, Véronique Brokke, Paul W G Elbers, Patrick Thoral, Alejandro Castillejo, Tomás Trenor, Jose M Castellano, Alberto E Bronchalo, Tobias M Merz, Martin Faltys, Collaborator group, Iwan C C van der Horst, Minnan Xu, Leo Anthony Celi, Bas C T van Bussel^*, Xavier Borrat^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

Sharing healthcare data is increasingly essential for developing data-driven improvements in patient care at the Intensive Care Unit (ICU). However, it is also very challenging under the strict privacy legislation of the European Union (EU). Therefore, we explored four successful open ICU healthcare databases to determine how open healthcare data can be shared appropriately in the EU. A questionnaire was constructed based on the Delphi method. Then, follow-up questions were discussed with experts from the four databases. These experts encountered similar challenges and regarded ethical and legal aspects to be the most challenging. Based on the approaches of the databases, expert opinion, and literature research, we outline four distinct approaches to openly sharing healthcare data, each with varying implications regarding data security, ease of use, sustainability, and implementability. Ultimately, we formulate seven recommendations for sharing open healthcare data to guide future initiatives in sharing open healthcare data to improve patient care and advance healthcare.

Original language	English
Article number	404
Number of pages	9
Journal	Scientific data
Volume	10
Issue number	1
DOIs	https://doi.org/10.1038/s41597-023-02256-2
Publication status	Published - 24 Jun 2023

Keywords

Humans
Privacy
Computer Security
Delivery of Health Care
Surveys and Questionnaires
Forecasting
Information Dissemination

Access to Document

10.1038/s41597-023-02256-2Licence: CC BY

Cite this

de Kok, J. W. T. M., de la Hoz, M. Á. A., de Jong, Y., Brokke, V., Elbers, P. W. G., Thoral, P., Castillejo, A., Trenor, T., Castellano, J. M., Bronchalo, A. E., Merz, T. M., Faltys, M., Collaborator group, van der Horst, I. C. C., Xu, M., Celi, L. A., van Bussel, B. C. T., & Borrat, X. (2023). A guide to sharing open healthcare data under the General Data Protection Regulation. Scientific data, 10(1), Article 404. https://doi.org/10.1038/s41597-023-02256-2

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abstract = "Sharing healthcare data is increasingly essential for developing data-driven improvements in patient care at the Intensive Care Unit (ICU). However, it is also very challenging under the strict privacy legislation of the European Union (EU). Therefore, we explored four successful open ICU healthcare databases to determine how open healthcare data can be shared appropriately in the EU. A questionnaire was constructed based on the Delphi method. Then, follow-up questions were discussed with experts from the four databases. These experts encountered similar challenges and regarded ethical and legal aspects to be the most challenging. Based on the approaches of the databases, expert opinion, and literature research, we outline four distinct approaches to openly sharing healthcare data, each with varying implications regarding data security, ease of use, sustainability, and implementability. Ultimately, we formulate seven recommendations for sharing open healthcare data to guide future initiatives in sharing open healthcare data to improve patient care and advance healthcare.",

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de Kok, JWTM, de la Hoz, MÁA, de Jong, Y, Brokke, V, Elbers, PWG, Thoral, P, Castillejo, A, Trenor, T, Castellano, JM, Bronchalo, AE, Merz, TM, Faltys, M, Collaborator group, van der Horst, ICC, Xu, M, Celi, LA, van Bussel, BCT & Borrat, X 2023, 'A guide to sharing open healthcare data under the General Data Protection Regulation', Scientific data, vol. 10, no. 1, 404. https://doi.org/10.1038/s41597-023-02256-2

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AU - de la Hoz, Miguel Á Armengol

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AU - Elbers, Paul W G

AU - Thoral, Patrick

AU - Castillejo, Alejandro

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AU - Castellano, Jose M

AU - Bronchalo, Alberto E

AU - Merz, Tobias M

AU - Faltys, Martin

AU - Collaborator group

AU - van der Horst, Iwan C C

AU - Xu, Minnan

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AU - van Bussel, Bas C T

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KW - Computer Security

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KW - Surveys and Questionnaires

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