A guide to sharing open healthcare data under the General Data Protection Regulation
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Published:2023-06-24
Issue:1
Volume:10
Page:
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ISSN:2052-4463
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Container-title:Scientific Data
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language:en
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Short-container-title:Sci Data
Author:
de Kok Jip W. T. M.ORCID, de la Hoz Miguel Á. Armengol, de Jong Ymke, Brokke Véronique, Elbers Paul W. G., Thoral Patrick, Castillejo Alejandro, Trenor Tomás, Castellano Jose M., Bronchalo Alberto E., Merz Tobias M., Faltys Martin, Casares Cristina, Jiménez Araceli, Requejo Jaime, Gutiérrez Sonia, Curto David, Rätsch Gunnar, Peppink Jan M., Driessen Ronald H., Sijbrands Eric J. G., Kompanje Erwin J. O., Girbes Armand R. J., Barberan Jose, Varona Jose Felipe, Villares Paula, van der Horst Iwan C. C., Xu Minnan, Celi Leo AnthonyORCID, van Bussel Bas C. T., Borrat XavierORCID,
Abstract
AbstractSharing 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.
Funder
U.S. Department of Health & Human Services | NIH | Office of Extramural Research, National Institutes of Health
Publisher
Springer Science and Business Media LLC
Subject
Library and Information Sciences,Statistics, Probability and Uncertainty,Computer Science Applications,Education,Information Systems,Statistics and Probability
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