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

Area of Science:

• Health Informatics
• Data Science
• Intensive Care Medicine

Background:

• Sharing healthcare data is vital for improving patient care in Intensive Care Units (ICUs).
• Strict European Union (EU) privacy legislation presents significant challenges to healthcare data sharing.
• Existing open ICU healthcare databases offer valuable insights into successful data sharing practices.

Purpose of the Study:

• To explore successful open ICU healthcare databases to determine appropriate methods for sharing healthcare data within the EU.
• To identify challenges and best practices for open healthcare data sharing under EU privacy regulations.
• To develop actionable recommendations for future open healthcare data initiatives.

Main Methods:

• Utilized the Delphi method to construct a questionnaire for data collection.
• Conducted follow-up discussions with experts from four established open ICU healthcare databases.
• Integrated expert opinions, literature research, and database approaches to formulate findings.

Main Results:

• Experts identified ethical and legal aspects as the primary challenges in healthcare data sharing.
• Four distinct approaches to open healthcare data sharing were outlined, varying in security, usability, sustainability, and implementability.
• Common challenges were recognized across the studied databases.

Conclusions:

• Openly sharing healthcare data requires careful consideration of ethical, legal, and practical implications.
• The identified approaches provide a framework for navigating data sharing complexities in the EU.
• Seven recommendations are proposed to guide future initiatives in open healthcare data sharing for improved patient outcomes and research advancement.