ISCF HDRUK DIH Sprint Exemplar: A scalable federated solution for UK health data encryption, linking and discovery

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 LHCREs). To complement this, compatible methods need to also 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 HDRUK, TDCC, governance and other experts. We will establish a network of linkable and co-discoverable patientrelated datasets, anchored on a substantial set of ‘LLR’ GP records (Leicester, Leicestershire, Rutland). 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.

The UK’s health data ecosystem needs to link datasets on individuals, via a universal technology plus operational policies, so that record de-identification, encryption and linking can support data discovery, sharing, integration and analysis models across a continuum of federated-centralised models. NHS Digital is working with Privitar to provide such capabilities in primarily centralised arrangements. We will complement their approach by implementing Privitar’s technologies across the Midlands to also leverage advantages (immediacy, customisation, deep discoverability, local control) of a more federated architecture. We plan four activities:
1) Encryption and linking - upon the substantial ‘LLR’ GP dataset using Privitar's technology operated by NHS Leicestershire Health Informatics Service (LHIS), and also upon exemplars from other primary care, secondary care, biobank and cohort datasets to demonstrate scalability and linkability;
2) Data discovery - by deploying mature software (Café Variome) on top of linked searchable facets from these datasets in a secure federated manner;
3) Utility case study – on multimorbidity to iteratively specify and assess system utility;
4) Scalability Planning – via a strategic ‘scalability’ committee (PPI, HDRUK, NHS Digital, governance, regional Trusts, industry, researchers) to monitor progress and define a nationally optimised route for scaling up in depth, breadth and functionality.