Mapping and evaluating national data flows: transparency, privacy, and guiding infrastructural transformation

Area of Science:

• Health Informatics
• Data Governance
• Public Health

Background:

• Big health data is globally recognized for its potential in population-level health insights.
• Electronic health records in the UK National Health Service (NHS) offer vast datasets but face data-sharing challenges.
• Existing policies highlight issues with transparency, privacy, and analysis capabilities in health data sharing.

Purpose of the Study:

• To map all electronic patient data flows across England.
• To identify challenges and risks associated with current NHS data sharing practices.
• To provide recommendations for transforming health data infrastructure and promoting transparency.

Main Methods:

• Utilized public information sources to trace data flows.
• Analyzed data pathways from NHS providers to over 460 academic, commercial, and public consumers.
• Assessed data interactions against best practices for safe data access.

Main Results:

• Identified multistage data flow chains that limit transparency and risk public trust.
• Found that most data interactions do not meet recommended safe data access practices.
• Observed infrastructure issues leading to data asset aggregation, limiting diversity and value.

Conclusions:

• NHS data supports a global research ecosystem but requires infrastructure transformation.
• Addressing transparency, privacy, and data diversity is crucial for maximizing the value of health data.
• A new website (DataInsights.uk) has been developed to enhance transparency and showcase NHS data assets.