TY - JOUR
T1 - A guide to sharing open healthcare data under the General Data Protection Regulation
AU - de Kok, Jip W. T. M.
AU - de la Hoz, Miguel Á. Armengol
AU - de Jong, Ymke
AU - Brokke, V. ronique
AU - Elbers, Paul W. G.
AU - Thoral, Patrick
AU - Castillejo, Alejandro
AU - Trenor, Tomás
AU - Castellano, Jose M.
AU - Bronchalo, Alberto E.
AU - Merz, Tobias M.
AU - Faltys, Martin
AU - Casares, Cristina
AU - Jiménez, Araceli
AU - Requejo, Jaime
AU - Gutiérrez, Sonia
AU - Curto, David
AU - Rätsch, Gunnar
AU - Peppink, Jan M.
AU - Driessen, Ronald H.
AU - Sijbrands, Eric J. G.
AU - Kompanje, Erwin J. O.
AU - Girbes, Armand R. J.
AU - Barberan, Jose
AU - Varona, Jose Felipe
AU - Collaborator group
AU - Villares, Paula
AU - van der Horst, Iwan C. C.
AU - Xu, Minnan
AU - Celi, Leo Anthony
AU - van Bussel, Bas C. T.
AU - Borrat, Xavier
N1 - Publisher Copyright: © 2023, The Author(s).
PY - 2023/12/1
Y1 - 2023/12/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85162737355&partnerID=8YFLogxK
U2 - https://doi.org/10.1038/s41597-023-02256-2
DO - https://doi.org/10.1038/s41597-023-02256-2
M3 - Article
C2 - 37355751
SN - 2052-4463
VL - 10
JO - Scientific Data
JF - Scientific Data
IS - 1
M1 - 404
ER -