Information governance framework for national patient-data sharing across the UK's original Biomedical Research Centres

Dame Sally Davies, then Chief Medical Officer, challenged the UK's five original national Biomedical Research Centres to share complex and voluminous patient datasets for pioneering population-level research.

Sharing patient data across multiple NHS and academic organisations required lawful, secure and trusted arrangements for anonymising, pseudonymising and merging data from many clinical systems — without which the research could not proceed.

Legal, information governance and information security leadership to design a framework under which data could be shared safely across all five centres.

1. 01

   Assess

   Worked with academicians, clinicians, technologists and programme managers across the centres to understand data flows and research needs.

2. 02

   Build

   Developed the information governance framework covering lawful sharing, anonymisation, pseudonymisation and merging of data from multiple clinical systems.

3. 03

   Assure

   Provided legal, information governance and information security consultancy so the framework could be adopted across all five centres.

Engagement phases: Assess · Build · Assure

• Multi-centre information governance framework
• Data-sharing governance arrangements
• Anonymisation and pseudonymisation governance approach

Relevant to research consortia, NHS and academic partnerships, trusted research environments and data platforms that need lawful, trusted data-sharing frameworks.

Further evidence can be discussed subject to confidentiality and client permissions.