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 Division 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. https://www.hdruk.ac.uk/news/two-health-data-research-uk-studies-find-only-small-elevated-risk-of-blood-clots-following-astrazeneca-covid-19-vaccination/
- 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. https://www.hdruk.ac.uk/case-studies/how-unlocking-health-data-shaped-the-covid-19-vaccine-rollout-2/
- 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. https://www.hdruk.ac.uk/case-studies/one-wales-how-data-assets-from-the-national-core-studies-have-informed-the-welsh-governments-pandemic-response/
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.
One of the key research driver programmes of this exciting initiative is Big Data for Complex Disease, which will be co-led by Professor Mark Lawler, Associate Pro-Vice-Chancellor, Professor of Digital Health at Queen’s University Belfast and Scientific Director of DATA-CAN, the UK’s Health Data Research Hub for Cancer and Professor Cathie Sudlow Chief Scientist and Deputy Director at HDR UK and Director of the British Heart Foundation Data Science Centre.
The research driver programme will help to tackle some of the biggest global health challenges, with an initial focus on cancer and cardiovascular disease, delivering a new data-informed approach to enhance research and its translation in these two common diseases.
Professor Lawler said “This is an unprecedented opportunity to bring together the best minds in the UK to address the two Big “C’s” of human health, cancer and cardiovascular disease, which collectively kill over 320,000 people in the UK each year. We will deploy a new approach, underpinned by the smart use of data, to provide a better insight into the key drivers of these diseases and use these insights to transform the lives of our patients and citizens”
“We are in a unique position to realise the potential of health data across the UK, thanks to the NHS and its cradle-to-grave records for a population of over 65 million people” said Professor Sudlow. “We need to ensure that we maximise the potential for health data research to underpin better care and improve outcomes across the UK.”
The programme will also look at the crucial intersect between cancer and cardiovascular disease. Debbie Keatley, a cancer survivor and member of the Norther Ireland Cancer Research Consumer Forum said “ People with cancer overwhelmingly want to see their data being used responsibly and efficiently, to benefit patients now and in the future. Cancer patients know that many cancer therapies can be cardiotoxic but these same treatments give them the best chance of surviving their cancer. This research programme offers huge potential to deliver on the promise of improved survivorship for people with cancer and is critical to delivering best care, both in the short term and over time for cancer and cardiovascular patients. I am thrilled to be a part of this programme from the beginning and excited to help shape the research agenda.”
Professor Lawler added: “The patient perspective is at the centre of all that we do. Patient informed and approved research, making effective and responsible use of health data, is vital to us making real progress against these two major killers while maintaining the trust of our citizens.”
Dr Janice Bailie, Assistant Director of Health and Social Care Research & Development Division (HSC R&D Division), Public Health Agency, Northern Ireland, said: “Northern Ireland is proud to be a partner in the HDR UK programme. It has brought important opportunities for networking, sharing and learning, and has provided invaluable support in advancing the data infrastructure in Northern Ireland through the establishment of the NI Trusted Research Environment. I look forward to our involvement in the continuation of this work and the important benefits it will provide for the citizens of Northern Ireland.”
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."
Dr Rob Buckle, Chief Science Officer at the MRC, part of UKRI, said: “The 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.”
Professor Sir Nilesh Samani, Medical Director of the British Heart Foundation, said: “The first five years of Health Data Research UK has brought incredible progress in heart and circulatory diseases research. The access to large-scale health data they enable has been priceless for many researchers looking into the prevention and treatment of the world’s biggest killers. Health data will define the next era of research, but we are only just beginning to tap into its power to accelerate discoveries. We look forward to continuing our close relationship with HDR UK, building on the momentum of the last five years to produce real improvement for patients.”
Dr Catherine Elliot, Director of Research at Cancer Research UK, said: “We are so pleased to be supporting Health Data Research UK's work to unite the country’s health data and enable the scientific community to generate new insights. This collaboration will help us work towards our goals, outlined in our research data strategy, of maximising the scientific value of data to improve patient outcomes.”
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.”
Professor Kieran Walshe, Director of Health and Care Research Wales, said: “We are excited to continue to be part of the funding partnership for Health Data Research UK. Data-driven research is a critical part of the research infrastructure in Wales and it is fantastic to be part of this important work.”
Notes for editors
- Contact: Kate McAllister, Health Data Research UK, kate.mcallister@hdruk.ac.uk, 07845 261431
- The investment from the funders will support HDR UK’s new 2023-28 strategy: https://www.hdruk.ac.uk/about-us/our-strategy/
- Health data can include patient health records, medicine prescribing, information on our genetic makeup, results from blood or tissue samples, X-ray and MRI images, even data from health and fitness devices. Every day, large amounts of health-related data are generated by the NHS and other health and care services on health conditions, maternity and early childhood, causes of death and quality of life.
- There are various ways in which health data is protected in research to ensure it is accessed in safe and secure ways. Identifying information can be removed to make records anonymous, strict legal contracts are put in place and robust data security standards are implemented. Data is now often made available only in Trusted Research Environments, highly secure computing environments to provide remote access in a controlled way to researchers. The data is then never transferred to the researcher.
- It is important to use large datasets, including those that cover whole populations, because this large statistical power enables:
- Studies of rare conditions and diseases, or very rare side effects, where there may only be a few hundred cases nationwide;
- Differences between local areas to be picked up;
- Analyses by age, ethnicity, and other factors; and
- Investigation of the many combinations of drugs people may be taking for complex disease.
- Health Data Research UK is the national institute for health data that includes England, Wales, Scotland and Northern Ireland. Its mission is to unite the UK’s health data to enable discoveries that improve people’s lives. It is a charity funded by UK Research and Innovation, the Department of Health and Social Care in England and equivalents in Northern Ireland, Wales and Scotland, and leading medical research charities. www.hdruk.org