Data are transforming health and social care, enabling life-changing discoveries, advancing healthcare services, and improving lives. Yet, health data providers face challenges in extracting and linking these complex data and safeguarding its release for research. Risk assessments are key to ensure that data access does not pose privacy risks, such as containing identifiable patient information or that patients' records are processed correctly. Current processes are ad-hoc, manual, and time-consuming and can prohibit data access, ultimately limiting health and social care innovation.
This project focused on delivering semi-automated tools and exploring approaches to improve two areas of risk assessment and monitoring: Data provenance, improving the trustworthiness of data ingestion, processing and linking, making sure it is compliant for research; and Privacy assessment, minimising the risk of identifiable information in clinical free-text records (e.g., GP letters, discharge summaries). Public Involvement and Engagement (PIE) were central to our project by ensuring risks were properly identified and addressed, public perspectives were embedded into our outcomes, and our methods were transparent and understandable.
