An ethical framework for sharing patient data without consent.

Area of Science:

• Health Informatics
• Data Privacy
• Information Security

Background:

• Current methods for private patient record sharing lack consensus.
• A framework is proposed for securely sharing sensitive patient data.
• Tailoring data sharing to project-specific privacy risks balances public trust and data quality.

Purpose of the Study:

• To enhance data protection by minimizing privacy breaches.
• To facilitate appropriate patient data sharing without requiring explicit consent.

Main Methods:

• Harm from data sharing stems from data identification (full or partial).
• Establish an agreed-upon acceptable privacy breach risk level.
• Measure the specific risk for proposed data and recipient.
• Implement mitigation strategies (people, process, technical) to achieve acceptable risk.
• Framework validated against the UK's Patient Information Advisory Group approach.

Main Results:

• Dividing the challenge of non-consented data sharing into data and recipient breach risk measurement.
• Research in these areas is crucial for solving the data sharing problem.

Conclusions:

• The proposed framework offers a structured approach to managing data privacy risks.
• Measuring data and recipient breach risks are key to enabling secure, non-consented data sharing.