دورية أكاديمية
A guide to sharing open healthcare data under the General Data Protection Regulation
| العنوان: | A guide to sharing open healthcare data under the General Data Protection Regulation |
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| المؤلفون: | de Kok, Jip W. T. M., 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 Anthony, van Bussel, Bas C. T., Borrat, Xavier |
| المساهمون: | U.S. Department of Health & Human Services | NIH | Office of Extramural Research, National Institutes of Health |
| المصدر: | Scientific Data ; volume 10, issue 1 ; ISSN 2052-4463 |
| بيانات النشر: | Springer Science and Business Media LLC |
| سنة النشر: | 2023 |
| مصطلحات موضوعية: | Library and Information Sciences, Statistics, Probability and Uncertainty, Computer Science Applications, Education, Information Systems, Statistics and Probability |
| الوصف: | 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. |
| نوع الوثيقة: | article in journal/newspaper |
| اللغة: | English |
| DOI: | 10.1038/s41597-023-02256-2 |
| الإتاحة: | https://doi.org/10.1038/s41597-023-02256-2Test https://www.nature.com/articles/s41597-023-02256-2.pdfTest https://www.nature.com/articles/s41597-023-02256-2Test |
| حقوق: | https://creativecommons.org/licenses/by/4.0Test ; https://creativecommons.org/licenses/by/4.0Test |
| رقم الانضمام: | edsbas.8BB61208 |
| قاعدة البيانات: | BASE |
| DOI: | 10.1038/s41597-023-02256-2 |
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