A project led by the University of Leicester is one of 10 projects announced to receive a share of £3 million Government funding to prove the potential of health data to transform lives.
The project will receive approximately £270,000 to develop a secure, confidential solution to make patient datasets safely linkable and discoverable so that a complete patient profile can be readily located.
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.
The team is working with NHS digital, NHS Leicestershire Health Informatics and privacy engineering company Privitar to establish a network of encrypted linkable and co-discoverable patient-related datasets. 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 has some of the richest health data or anywhere in the world, yet it is fragmented, and its potential to improve lives is often untapped. To address this and demonstrate the power of data in health research to transform lives the Government is funding ‘proof of concept’ initiatives, led by Health Data Research UK. These will inform the creation of a UK-wide infrastructure that securely and safely connects health data research and innovation.
The projects are funded by UK Research and Innovation (UKRI) as part of the government’s modern Industrial Strategy, which aims to tackle the big societal and industrial challenges of today such as an ageing population.
The project was selected following a UK-wide competition to demonstrate how health data can improve health outcomes for people across the UK, as one of 10 ‘Sprint Exemplar Innovation Projects’. Each of the initiatives will build on best practice and will inform the future delivery of a UK-wide infrastructure for health data research and innovation.
Professor Anthony Brookes, Professor of Genetics at the University of Leicester and project co-lead, said: “It is very exciting to be one of the few Sprint projects chosen to guide the UK in how to safely and effectively employ healthcare-related data for new types of research.”
He further added that: “Engaging our particularly diverse and stable regional population in this mission, and aligning this with the forefront biomedical research we do in Leicester and the Midlands, provides unique opportunities for better understanding, preventing and treating disease.”
Professor Umesh Kadam, Professor of Primary Care and Public Health Research and project co-lead said: “The success of this Sprint project represents the real strengths of the academic-service-industry partnership that we have developed and which will address fundamental data issues that are needed to do innovative research into disease and systems of care delivery for patients.”
Professor Nigel Brunskill, Director of Research and Innovation at Leicester’s Hospitals, said: “Access to patient data is essential to the cutting-edge research work performed in Leicester’s Hospitals and in our NIHR Leicester Biomedical Research Centre (BRC). This project will directly support our BRC researchers and provide new ways to test novel treatments for the benefit of our patients.”
Professor Andrew Morris, Director of Health Data Research UK, said: “These 10 projects from across the UK, all led by clinicians working with researchers and industry partners, will demonstrate how the trustworthy use of health data and technology can improve patient pathways, make ground-breaking discoveries quicker and put the patient in charge.
“We are very excited about bringing these digital projects together with public participation and support so that health data research is brought to life at scale, demonstrating public and patient benefit of digital innovation in healthcare.”
Nicola Blackwood, Health Minister, said: “The NHS has an unrivalled data pool – we need to work with researchers, experts and industry partners to take full advantage of this to unlock solutions to some of healthcare’s biggest challenges.
“These 10 innovative projects are just the start of a technological revolution to create one of the most advanced health and care systems in the world to diagnose diseases earlier, save lives and empower patients to take greater control of their own healthcare.”