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£70 million award to transform potential of UK health data

£70 million award to transform potential of UK health data

11th May 2023

More than £70 million has been granted to Health Data Research UK (HDR UK) by nine of the largest government and charity research funders in the UK

The funding will support HDR UK’s core work to accelerate trustworthy access to health data and improve treatments, deliver better health care and save lives.

It will help to tackle some of the biggest global health crises, including cancer, diabetes and cardiovascular disease, and could speed up and reshape approaches to research.

The UK is in a unique position to realise the potential of health data, thanks to the NHS and its cradle-to-grave records for a population of over 65 million people. However, safe and secure access to this data for researchers is often a lengthy, fragmented process, meaning the potential for improving healthcare is not being realised in full.

HDR UK is the national institute for health data science. It works with the NHS and partners in universities, charities, industry and regulators in bringing the UK’s health data together to make discoveries that improve people’s lives.

HDR UK was established five years ago with core funding of £52.7 million. Following an in-depth review by an international panel, the funding for 2023 to 2028 has been increased to £72.3 million over five years.

The nine funding partners are the Medical Research Council (MRC), the National Institute for Health and Care Research (NIHR), the British Heart Foundation, Cancer Research UK, the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the Chief Scientist Office of the Scottish Government Health Directorates, Health and Care Research Wales, and Health & Social Care R&D in Northern Ireland.

HDR UK Director, Professor Andrew Morris, said: “The transformative potential of health data research is a long way from being realised in full. Only a small proportion of NHS, biomedical and health-relevant data is accessible for research. Our work is far from done if we are to benefit patients and improve lives – this significant funding award is a step change in ensuring we achieve this mission.”

Angela Coulter, former Chair of HDR UK’s Public Advisory Board, said: “Using health data to produce knowledge that will benefit all of us is crucially dependent on public trust. That’s why HDR UK aims to involve people from all social groups in determining priorities, shaping research questions, monitoring outputs and ensuring transparency throughout the research process. This will continue to be a key feature of the next phase of the work programme.”

The next five years of funding will see HDR UK follow a plan to increase the speed, scale and quality of health data science and so enable new discoveries.

  • UK-wide, collaborative research programmes will drive forward the use of large datasets in different areas: from cancer and heart disease to respiratory disease, from the use of medicines to looking at social and environmental impacts on health
  • The current fragmentation and lack of standardisation in the data will be tackled by working with many different organisations, building capabilities and supporting real team science
  • Patients and the public will continue to be involved throughout the Institute's work – ensuring that access to data for research is enabled by trustworthy, safe and secure systems and generates public benefit

This work builds on the successes of the first five years of the institute, particularly during the COVID-19 pandemic when the rapid linking and analysis of health data in the four devolved nations informed government responses at many stages.

  • HDR UK’s work enabled the extremely rare side-effects from vaccinations to be investigated while the vaccine programme was running. For the first time it was possible to analyse electronic health records from all 46 million adults in England to reliably pick up the very small number of blood clots from different vaccines. This gave great reassurance that the risks were very small. Read more
  • EAVE II, a study led by Professor Sir Aziz Sheikh, provided the first evidence of COVID vaccine effectiveness in the real-world, demonstrating that both the Pfizer and Astra-Zeneca vaccines reduced hospitalisations and deaths. The findings, using patient data from over 5.4 million people in Scotland, were announced in press conferences by UK and Scottish Governments, impacting lockdown rules in the UK and leading to altered vaccine policy in France, Germany and Canada. Read more
  • In Wales, the Secure Anonymised Information Linkage (SAIL) Databank holds very complete anonymised data. HDR UK worked with a number of partners to provide analysis which helped Welsh policymakers tackle COVID-19, for example using accurate spatial data to inform regional lockdown restrictions. Read more

These successes and many others have resulted from HDR UK’s success in assembling a UK-wide data infrastructure and services for health research – including not only technology, but the underpinning governance, ethics, standards, public engagement and data curation to enable health data research.

Over 1,500 researchers across 39 organisations are members of the institute. HDR UK has enabled collaborative research involving over 500 organisations, created the UK Health Data Research Alliance and the Health Data Research Innovation Gateway, and has convened a network of Trusted Research Environments (TREs) across the UK. This is enabling safe research access to over 720 datasets held by 60 data custodians.

Professor Dame Anna Dominiczak, Scottish Government Chief Scientist for Health, said: “I am delighted that HDR UK will continue to be supported by the funding partnership to accelerate the data-driven research that is increasingly important to improving our understanding of diseases and the prevention, diagnosis, and treatment of ill health.”

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