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.

Details

Title
A guide to sharing open healthcare data under the General Data Protection Regulation
Author
de Kok, Jip W. T. M. 1   VIAFID ORCID Logo  ; de la Hoz, Miguel Á. Armengol 2 ; de Jong, Ymke 3 ; Brokke, Véronique 3 ; Elbers, Paul W. G. 4 ; Thoral, Patrick 4 ; Castillejo, Alejandro 5 ; Trenor, Tomás 5 ; Castellano, Jose M. 6 ; Bronchalo, Alberto E. 6 ; Merz, Tobias M. 7 ; Faltys, Martin 8 ; Casares, Cristina 9 ; Jiménez, Araceli 9 ; Requejo, Jaime 9 ; Gutiérrez, Sonia 10 ; Curto, David 11 ; Rätsch, Gunnar 12 ; Peppink, Jan M. 4 ; Driessen, Ronald H. 4 ; Sijbrands, Eric J. G. 13 ; Kompanje, Erwin J. O. 14 ; Girbes, Armand R. J. 4 ; Barberan, Jose 15 ; Varona, Jose Felipe 15 ; Villares, Paula 16 ; van der Horst, Iwan C. C. 1 ; Xu, Minnan 17 ; Celi, Leo Anthony 18   VIAFID ORCID Logo  ; van Bussel, Bas C. T. 19 ; Borrat, Xavier 20   VIAFID ORCID Logo 

1  Maastricht University Medical Centre+, Department of Intensive Care Medicine, Maastricht, the Netherlands (GRID:grid.412966.e) (ISNI:0000 0004 0480 1382); Maastricht University, Cardiovascular Research Institute Maastricht (CARIM), Maastricht, the Netherlands (GRID:grid.5012.6) (ISNI:0000 0001 0481 6099) 
2  Regional Ministry of Health of Andalucia, Big Data Department, PMC, Fundacion Progreso y Salud (FPS), Seville, Spain (GRID:grid.476357.4) (ISNI:0000 0004 1759 7341) 
3  Philips, Eindhoven, the Netherlands (GRID:grid.417284.c) (ISNI:0000 0004 0398 9387) 
4  Amsterdam University Medical Centers, Vrije Universiteit, Center for Critical Care Computational Intelligence (C4I), Department of Intensive Care Medicine, Amsterdam, The Netherlands (GRID:grid.12380.38) (ISNI:0000 0004 1754 9227) 
5  Sanitas - Data4Good, Madrid, Spain (GRID:grid.12380.38) 
6  Fundación de Investigación HM Hospitales, Grupo HM Hospitales, Madrid, Spain (GRID:grid.428486.4) (ISNI:0000 0004 5894 9315) 
7  Cardiovascular Intensive Care Unit, Auckland City Hospital, Auckland, New Zealand (GRID:grid.414055.1) (ISNI:0000 0000 9027 2851) 
8  University Hospital, University of Bern, Department of Intensive Care Medicine, Bern, Switzerland (GRID:grid.5734.5) (ISNI:0000 0001 0726 5157) 
9  Sanitas Seguros, Madrid, Spain (GRID:grid.5734.5) 
10  Sanitas Hospitales, Madrid, Spain (GRID:grid.5734.5) 
11  Sanitas Mayores, Madrid, Spain (GRID:grid.5734.5) 
12  Department of Computer Science, ETH Zürich, Zürich, Switzerland (GRID:grid.5801.c) (ISNI:0000 0001 2156 2780) 
13  Erasmus MC, Department of Internal Medicine, Rotterdam, The Netherlands (GRID:grid.5645.2) (ISNI:000000040459992X) 
14  Erasmus MC, Department of Intensive Care Medicine, Rotterdam, The Netherlands (GRID:grid.5645.2) (ISNI:000000040459992X) 
15  Department of Internal Medicine, Hospital Universitario Monteprincipe, Grupo HM Hospitales, Madrid, Spain (GRID:grid.428486.4) (ISNI:0000 0004 5894 9315) 
16  Department of Internal Medicine, Hospital Universitario Sanchinarro, Grupo HM Hospitales, Madrid, Spain (GRID:grid.488453.6) (ISNI:0000000417724902) 
17  Philips Research North America, Cambridge, USA (GRID:grid.417285.d) 
18  Laboratory for Computational Physiology, Harvard-MIT Division of Health Sciences & Technology, Cambridge, Massachusetts, USA (GRID:grid.413735.7) (ISNI:0000 0004 0475 2760); Harvard Medical School, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, USA (GRID:grid.38142.3c) (ISNI:000000041936754X); Chan School of Public Health, Department of Biostatistics Harvard T.H, Boston, USA (GRID:grid.189504.1) (ISNI:0000 0004 1936 7558) 
19  Maastricht University Medical Centre+, Department of Intensive Care Medicine, Maastricht, the Netherlands (GRID:grid.412966.e) (ISNI:0000 0004 0480 1382); Maastricht University, Cardiovascular Research Institute Maastricht (CARIM), Maastricht, the Netherlands (GRID:grid.5012.6) (ISNI:0000 0001 0481 6099); Maastricht University, Care and Public Health Research Institute (CAPHRI), Maastricht, the Netherlands (GRID:grid.5012.6) (ISNI:0000 0001 0481 6099) 
20  Chan School of Public Health, Department of Biostatistics Harvard T.H, Boston, USA (GRID:grid.189504.1) (ISNI:0000 0004 1936 7558); Anaesthesiology and Critical Care Department, Hospital Clinic de Barcelona, Barcelona, Spain (GRID:grid.410458.c) (ISNI:0000 0000 9635 9413); Hospital Clinic de Barcelona, Medical Informatics Department, Barcelona, Spain (GRID:grid.410458.c) (ISNI:0000 0000 9635 9413) 
Pages
404
Publication year
2023
Publication date
2023
Publisher
Nature Publishing Group
e-ISSN
20524463
Source type
Scholarly Journal
Language of publication
English
DOI
https://doi.org/10.1038/s41597-023-02256-2
ProQuest document ID
2829117575
Copyright
© The Author(s) 2023. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.