The potential benefits of using healthcare data for research at scale could be transformative for patient care in the NHS. The challenge is that patient data is often held by multiple healthcare providers and data controllers across the UK, which makes it difficult for researchers to locate and access.

A team of academic, industry, and healthcare partners across Leicestershire and the Midlands have collaborated with privacy software company, Privitar, to explore how to link up anonymous primary and secondary care records and make them easily and securely discoverable by researchers.

The team designed a Privitar-based workflow to safely link data from different healthcare providers in a way that would preserve patient privacy. It was essential that the workflow and technologies implemented were scalable and possible to deploy and use at local, regional, and national levels. The software was installed at three locations – University Hospitals of Leicester, Leicestershire Health Informatics Service and University of Leicester – using fake NHS numbers and synthetic GP and hospital data to test that the workflow could safely link data from multiple sources. The project had positive results with the workflow, proving it could be used for controlled, safe linkage and discovery of data between the three sites.

Moreover, having seen this and been a part of establishing the system, the three test organisations want to keep the workflow alive and use it for joint work towards making healthcare-related data available for research purposes.

The team is now looking at incorporating social care as a source of data and, more broadly, the linking and discovery workflows are being incorporated in plans for the Midlands Local Health and Care Records Exemplar (LHCRE) – an NHS initiative to enable safe and secure sharing of an individual’s record as they move between different parts of the NHS and social care. Ultimately, the ambition is to expand to a national level, encouraging LHCREs and data controllers across the country to adopt this kind of single, proven system.

Partners: University of Leicester, University Hospitals of Leicester, Leicester City Clinical Commissioning Group and health care integration, University of Nottingham, University of Warwick, University Hospital Birmingham, NHS Leicestershire Health Informatics Service, Privitar