This project is funded by the UK Research and Innovation’s Industrial Strategy Challenge Fund (ISCF).
For healthcare and research purposes, diverse patient datasets need to be linked and made easy to find. This requires a unified national approach, designed to protect patient privacy and yet operate in a combined centralised and multi-party (federated) manner. NHS digital is working with SME Privitar to encrypt and link centralised datasets gathered nationally and regionally (e.g., via Local Health and Care Record Exemplars (LHCRE).
To complement this, compatible methods also need to be applied to federated resources – both regional and themed. Resulting sets of linkable data on individual patients then need to be made easy to co-discover in technically and ethically secure ways, as a prelude to access and analysis. We propose a Midlands project to demonstrate such a solution – involving data owners, Privitar and other companies as system providers, along with Health Data Research UK, UKCRC TDCC (UK Clinical Research Collaboration Tissue Directory and Coordination Centre), governance and other experts.
We will establish a network of linkable and co-discoverable patientrelated datasets, anchored on a substantial set of LLR (Leicester, Leicestershire, Rutland) GP records. The network will also span other regional primary care data, secondary care records, and biobank/cohort data. A case study in multimorbidity will inform and test the system’s detailed design, and a multi-disciplinary oversight committee will ensure scalability and national relevance.
Academic/NHS partners: University 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
Industry partners: Privitar
Lead organisation: Leicester – Tony Brookes