A guide to sharing open healthcare data under the General Data Protection Regulation

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.

Automated summary

Sharing healthcare data is crucial for enhancing patient care at the ICU, but it is challenging due to EU privacy regulations. To address this, we studied four successful open ICU healthcare databases to explore appropriate ways of sharing healthcare data in the EU. Through a questionnaire and discussions with experts, we identified four approaches and formulated seven recommendations for open healthcare data sharing, considering data security, ease of use, sustainability, and implementability.