International perspectives on sharing clinical data with patients

Area of Science:

• Health Informatics
• Patient Engagement
• Global Health

Background:

• Patient engagement in healthcare is increasingly vital.
• Access to personal clinical data is a cornerstone of patient engagement.
• International perspectives are crucial for understanding diverse approaches.

Purpose of the Study:

• To investigate the global landscape of patient access to clinical information.
• To identify current approaches, challenges, and opportunities in patient data access worldwide.

Main Methods:

• Cross-sectional, semi-structured interviews were conducted.
• Participants represented 16 countries across six continents.
• Inquiries focused on social, cultural, governmental, and technical factors.

Main Results:

• Substantive patient information initiatives exist in most interviewed countries.
• These initiatives demonstrate diversity in nature and implementation stage.
• Significant international variation exists in maturity, government involvement, and technical infrastructure.

Conclusions:

• Patient data access initiatives are active globally.
• Optimal strategies for patient engagement technologies are still emerging.
• An international perspective is essential for future development and best practices.