A guide to sharing open healthcare data under the General Data Protection Regulation
Jip W T M de Kok, Miguel Ángel Armengol de la Hoz, Y. de Jong, Véronique Brokke, Paul Elbers, Patrick Thoral, Alejandro Castillejo, Tomás Trenor, José María Castellano, Alberto E. Bronchalo, Tobias M. Merz, Martin Faltys, Collaborator group, Cristina Casares, Araceli Jiménez, Jaime Requejo, Sonia Gutiérrez, David Curto, Gunnar Rätsch, Jan M. Peppink, Ronald H. Driessen, Eric J.G. Sijbrands, Erwin J. O. Kompanje, Armand R. J. Girbes, José Barberán, José F. Varona, Paula Villares, Iwan C.C. van der Horst, Minnan Xu, Leo Anthony Celi, Bas C. T. van Bussel, X. Borrat
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.