AIMES alongside our collaborators on the Rare Disease Sprint Exemplar where awarded HDR UK Team of the Year at the One Institute event held by HDR UK last week.
The overall aim of the HDRUK Sprint Exemplar Innovation Projects was to develop research services and infrastructure across NHS, academia and industry to enable the utilisation of high value linked datasets for health data research at scale in the UK.
Working with data for patients who have given consent for their health records to be accessed for clinical research enrolled with the NIHR BioResource, the team focussed on integrating research data across three rare disease groups, supplemented by Electronic Patient Record (EPR) data from five NHS Trusts.
In just ten months, the Rare Diseases Sprint Innovation Project team (led by Prof John Bradley and supported by Eastern AHSN) developed the methodology and infrastructure to allow secure transfer, standardisation, integration and then analysis of routinely collected NHS data and research data (including genomics) held at the NIHR BioResource under the governance of Cambridge University Hospitals NHS Foundation Trust. Subsets of these data required for a specific use-case were then deidentified and combined within the HSCN network (inside the NHS firewall) at AIMES – a trusted aggregator of NHS data. The aggregated data were then pseudonymised using Privitar’s Publisher tool, and conversion to the HL7 FHIR data standard permitted the now de-identified data to be called via an API into a secure cloud research environment held on the new Microsoft Azure FHIR server with the tools and functionality required by academic and industry researchers to facilitate analysis, but with restrictions in place to prevent download and removal of data.
Between February and November 2019, the team developed and delivered a proof of principle model that is now replicable and scalable within the Digital Innovation Hub community.
The project team has exemplified how diverse teams across a variety of private and public stakeholders can deliver innovative and best-practice solutions. Together, they delivered what we believe may be a world first - cloud integration of longitudinal (captured over time) healthcare data, research and lifestyle data, and genomics.
This project has provided the basis for development of ‘Gut Reaction’, the Health Data Research Hub for Inflammatory Bowel Disease (IBD) and other research and development projects involving integration of data and new technologies inclining a high-profile Covid-19 study.Antony Shimmin who leads on AIMES HDR UK affiliated projects said “This was an exemplar project of how industry, academia, and the NHS can work together to achieve a common goal and deliver a secure, compliant and scalable cloud infrastructure all within a couple of months. It’s also a reflection upon our team, it’s ability to deliver under pressure, understand new systems, applications and provide enterprise class services in the field of Trustworthy Research