The Medical Research Council (MRC) led the first scientific review of the health data institute. MRC along with the Economic and Social Research Council (ESRC) and the Engineering and Physical Sciences Research Council (ESPRC) make up three of the nine funders.
The funding is aligned to UK Research and Innovation’s (UKRI) strategic theme of ‘Securing better health, ageing and wellbeing’. It will support HDR UK’s core work to accelerate trustworthy access to health data and improve treatments, deliver better healthcare 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 potential of health data
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.
Dr Rob Buckle, Chief Science Officer at MRC, part of UKRI, said:
MRC’s commitment to supporting HDR UK recognises the unique role of health data research in transforming healthcare in the UK.
In the last five years, the Institute has proved itself as a national leader and global player in bringing together world-leading expertise in data science to better understand disease, identify health risks and find new treatments that will change people’s lives.
Many of our own MRC and UKRI-led initiatives have been boosted by HDR UK’s support and we are confident the Institute and its partners will together unlock the full potential of health data research.
The additional six funding partners are:
- National Institute for Health and Care Research (NIHR)
- British Heart Foundation
- Cancer Research UK
- Chief Scientist Office of the Scottish Government Health Directorates
- Health and Care Research Wales
- Health and Social Care Research and Development 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.
Ensuring public trust
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 future of HDR UK
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. This plan includes:
- UK-wide, collaborative research programmes driving 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
- tackling the current fragmentation and lack of standardisation in the data, by working with many different organisations, building capabilities and supporting real team science
- continuing to involve patients and the public throughout the institute’s work, ensuring that access to data for research is enabled by trustworthy, safe and secure systems and generates public benefit
Over 1,500 researchers across 39 organisations are members of the institute. HDR UK has enabled collaborative research involving over 500 organisations.
HDR UK also created the UK Health Data Research Alliance and the Health Data Research Innovation Gateway, and has convened a network of Trusted Research Environments across the UK. This is enabling safe research access to over 720 datasets held by 60 data custodians.
Delivering better care
Minister of State for Health Will Quince said:
Data is key to better understanding the health of individuals and the population as a whole. With increased use of data we can speed up diagnoses and even predict outcomes and prevent conditions from developing.
Health Data Research UK is leading the way in progressing safe, secure access to information, backed by £15 million of government funding through NIHR, to accelerate trustworthy access to large data sets.
This will help improve treatments by identifying individual risk factors to how diseases are passed on from one person to another, deliver better care and ensure a better quality of life for patients both now and in the future.
HDR UK successes
The future work of HDR UK 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.
Rare COVID-19 vaccination side effects
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 about the HDR UK COVID-19 studies (HDR UK)
COVID-19 vaccine effectiveness
EAVE II, a study led by Professor Sir Aziz Sheikh, provided the first evidence of COVID-19 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. This had impacts for lockdown rules in the UK and led to altered vaccine policy in France, Germany and Canada.
Read about how unlocking health data shaped the COVID-19 vaccine rollout (HDR UK)
Secure Anonymised Information Linkage (SAIL) databank
In Wales, the 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 about how data assets from the National Core Studies have informed the Welsh Government’s pandemic response (HDR UK)
These successes and many others have resulted from HDR UK’s success in assembling a UK-wide data infrastructure and services for health research. This includes not only technology, but the underpinning governance, ethics, standards, public engagement and data curation to enable health data research.
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