The UK has some of the richest health data of 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.
Each of the ten funded initiatives will show how technology and data solutions can improve lives and speed up innovation in the NHS and UK life sciences. They bring together expertise from academia, healthcare and large and small industry partners to deliver greater benefits that organisations can achieve alone. They will use data responsibly and ethically for research that has the potential to transform our understanding of disease.
The ProtecT trial at NDS uses data from over 80,000 prostate cancer patients across the world to understand features that makes the cancer aggressive, to optimise treatment pathways and avoid overtreatment for less aggressive cancers.
Over the past 20 years, researchers at the Universities of Oxford and Bristol in nine UK centres have investigated a very important question by testing various treatment options in managing prostate cancer - the most common malignancy in men. The trial is the largest of its kind worldwide, comparing surgery, radiotherapy and active monitoring in prostate cancer patients. The results showed that early treatment reduces rates of the disease spreading, but at the cost of over-treating many men with unpleasant side effects. To distinguish men who need treatment from others who could be harmed by interventions, it is critical to undertake long-term research on samples donated by these participants, to understand features that make a cancer ‘aggressive’, requiring urgent treatment. To optimise this research for scientists everywhere, it is crucial to curate these samples and catalogue all their normal clinical information as well as results from the analysis of their samples in a user-friendly collection, which can be used to mine the information and develop new tests and treatments for the future.
The NDS project will develop such a unique collection, using latest digital and computer technologies in collaboration with Databiology, with safe provision of ethics, respecting the wishes of the many participants, so that new research can be undertaken.
The ten winning innovations, known as ‘Sprint Exemplar Innovation Projects’, are:
- Improving outcomes and reducing hospital admissions of 1,000 people with heart failure in Greater Manchester by using data from implantable devices already used to treat patients to detect earlier signs of deterioration – led by Health Innovation Manchester
- Improving outcomes for patients with epilepsy and reducing unnecessary admissions to A&E by connecting data from GPs, hospitals and ambulance services and making this available to paramedics and A&E staff when they are called to patients requiring urgent care – led by the University of Liverpool
- Using data from over 80,000 prostate cancer patients across the world to understand features that makes the cancer aggressive, to optimise treatment pathways and avoid overtreatment for less aggressive cancers – led by Oxford University
- Transforming understanding and improving diagnosis of rare diseases by combining NHS and research data – led by Cambridge University Hospitals NHS Foundation Trust
- Establishing a regional network of linked de-identified datasets of GP, hospital and research records that protects patient privacy and confidentiality and tests how this approach could work nationally – led by University of Leicester
- Evaluating the impact of ‘Streams’; a digital app that gives doctors and nurses real time clinical information via their smartphones – led by the Institute of Global Health Innovation (IGHI), Imperial College London
- Using hospital activity data to identify patients who may be suitable for large-scale clinical trials and increasing opportunities for volunteers to join major studies into new, life-saving innovations – led by Oxford University
- Improving children’s health by making better use of de-identified clinical data for research and use of technology that enables the safe handling of this data – led by Great Ormond Street Hospital for Children NHS Foundation Trust and UCL
- Creating a map that will enable researchers to find and explore different datasets in localities across the UK and explore how to link these for large scale research – led by the University of Edinburgh
- Developing a technology solution that enables patients with rare, genetic eye disease to access their own, connected data from multiple locations that helps improve care and research – led by Moorfields Eye Hospital NHS Foundation Trust.
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. This is the first step in creating ‘Digital Innovation Hubs’ across the UK to securely and safely connect data from the NHS with genomic data and other molecular data for research. Led by Health Data Research UK – the national institute for health data science – this will unlock opportunities for scientific discovery and support the development of future treatments, increase our understanding of disease, enhance health services and ultimately improve the way we are able to prevent, detect and diagnose diseases such as cancer, heart disease and asthma.
Director of Health Data Research UK Professor Andrew Morris said:
“These ten 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.”
Health Minister Nicola Blackwood 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 ten 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.”