health data research uk board

• Visit the Gateway
• Visit the Alliance
• Visit HDR UK Futures

Our Board Members

Our Board members bring exceptional and diverse skills and expertise to support us in the delivery of our mission to unite the UK’s health data to enable discoveries that improve people’s lives.

Our Board is responsible for the effective governance and development of the Institute, supports the Director in overseeing the delivery of our strategy, monitors key risks, and ensures resources are managed effectively. Our Board is supported three sub-committees, including Audit and Risk, Nominations, and Remuneration.

Special Advisors

Follow us on Twitter!

Follow us to keep up to date on the latest news and events from the health data science community.

• Visit the Gateway
• Visit the Alliance
• Visit HDR UK Futures

Advancing Health Research

Our research will use health data in all its forms – including NHS patient data, genomics, biomedicine and wearable data – to understand predispositions to disease, develop targeted treatments and deliver new discoveries from real-world data to improve patient care.

Our national health data scientific programmes leverage the interdisciplinary skills, expertise and partnerships across our six distributed sites, breaking down geographic and disciplinary boundaries.  Each will identify the big research questions that individual research organisations are unable to tackle alone.

The Human Phenome

We are interested in understanding diagnosis and risk of ill health across a wide range of health conditions, to develop new ways to improve patients’ lives and aid health care...

Applied Analytics

We use applied analytics for health data research and innovation to directly improve the NHS and help save lives. Our Applied Analytivs scientific priority aims to match expert knowledge of new...

Better, Faster and More Efficient Clinical Trials

We use health data to ensure that every individual across the UK has access to the latest treatments and technologies through access to clinical trials.

Improving Public Health

Find out all about how this science priority is improving people's lives - the strategy, projects underway, progress so far and the people involved

Understanding the Causes of Disease

We are using health data in its multiple forms to understand the causes of disease and discover new targeted treatments rather than just addressing symptoms.

Better Care

Research Publications

Explore HDR UK’s publications that deliver the organisation’s mission to unite the UK’s health data to make discoveries that improve people’s lives.

Research Projects

Case Studies

Our monthly research community bulletin.

Our Research Community Bulletin enables researchers, technologists and innovators to keep up-to-date on our latest funding calls, job vacancies, Gateway datasets and functions, training courses, announcements and more – sign up using the below form today!

£70 million award to transform potential of UK health data

10 May 2023

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

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.

Transforming healthcare

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.

Funding partners

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

Improving lives

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.

Further information

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.

Top image:  Credit: georgeclerk, iStock, Getty Images Plus via Getty Images

Share this page

• Share this page on Twitter
• Share this page on LinkedIn
• Share this page on Facebook

This is the website for UKRI: our seven research councils, Research England and Innovate UK. Let us know if you have feedback or would like to help improve our online products and services .

• - Google Chrome

Intended for healthcare professionals

• Access provided by Google Indexer
• My email alerts
• BMA member login
• Username * Password * Forgot your log in details? Need to activate BMA Member Log In Log in via OpenAthens Log in via your institution

Search form

• Advanced search
• Search responses
• Search blogs
• News & Views
• What’s Health Data...

What’s Health Data Research UK doing to help tackle covid-19?

Read our latest coverage of the coronavirus pandemic.

• Related content
• Peer review
• Jo Best , freelance journalist and doctor
• jo.best{at}journalist.com

The UK’s national institute for data science wants datasets to be more accessible to researchers in order to improve patient outcomes. Jo Best reports

What has HDR UK been doing during the pandemic?

Last year, the government’s chief scientific adviser, Patrick Vallance, identified the areas of covid-19 research in which the UK needed to bolster its capabilities. 1 Among these were “data and connectivity,” and Vallance charged Health Data Research UK (HDR UK) and the Office for National Statistics (ONS) with making health and administration data available for linking and use in covid-19 research.

“At the beginning of the pandemic everyone wanted to help, but we saw complete fragmentation of the research community,” Andrew Morris, director of HDR UK, told The BMJ . “There was also no prioritisation of the research questions that were important for pandemic response, and certainly no cohesive and coherent way of accessing data.”

What progress has been made?

HDR UK and the ONS have created 88 covid-19 specific datasets related to vaccines, viral genome, and testing, available for use within “trusted research environments”—secure spaces for researchers to access sensitive data. HDR UK’s work has facilitated the publication of 200 research papers on covid-19, including research using data from 5.4 million people 2 that showed covid vaccines reduce hospital admissions and a study that showed that infection presents more risk of thrombocytopenia and thromboembolic events than vaccination. 3 Over 1000 other papers are available as non-peer reviewed preprints.

How are patients involved?

HDR UK has been reporting fortnightly to the government’s Scientific Advisory Group for Emergencies to help prioritise research questions. HDR UK’s public advisory board highlights which questions are important to the public. The board noted public interest in the impact on social care, for example, resulting in more research funding for this area. The board also gauges public attitudes towards how their data are used, both in particular studies and more broadly. This information shapes policies on information governance, informs study designs, and encourages transparency in research.

HDR UK and others have investigated how to involve patients with covid-19 rapidly in clinical trials. The Principle trial, 4 for example, needed to identify and enrol participants within 24-48 hours of a positive covid antigen test. HDR UK’s patient and public panels and networks provided feedback on the ethics of the study’s proposed method of releasing would-be recruits’ data so that they could be invited by researchers to join the study.

Why was HDR UK created?

Troves of existing health data are isolated in siloes, aren’t standardised, or are poorly described—and therefore may be hard for researchers to access or use. HDR UK was created in 2018 by 10 funders, including the Medical Research Council, the Wellcome Trust, and the National Institute for Health Research, to improve the quality of large health datasets and make them findable by, and accessible to, researchers. HDR UK hopes researchers will ultimately be able to use data that are better described and shared to improve patient care and outcomes.

What is the Health Data Alliance?

Convened by HDR UK, this is a group of over 60 data custodians, including NHS trusts, research institutes, and research funding charities, that share their own health data and help other organisations to improve theirs. The alliance identifies and disseminates best practice for data sharing and provides information on the adoption of common standards, tools, and approaches to governance and public engagement to promote ethical data sharing and use. Over 600 datasets from alliance members, as well as 150 tools covering everything from questionnaires to machine learning programmes, are available. 5

How else can health data sharing be improved?

Researchers will increasingly need access to, and to be able to link, datasets from outside and within public health. Using data from, say, environmental and social sources, researchers will be able to understand better the impact of non-health variables on health. HDR UK is working with Administrative Data UK, which handles public sector data. HDR UK also aims to forge global partnerships to make data accessible across borders in a trustworthy way.

Provenance and peer review: Commissioned; not externally peer reviewed.

Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.

This article is made freely available for use in accordance with BMJ's website terms and conditions for the duration of the covid-19 pandemic or until otherwise determined by BMJ. You may use, download and print the article for any lawful, non-commercial purpose (including text and data mining) provided that all copyright notices and trade marks are retained.

• ↵ Government Office for Science, Vallance P. Letter. 28 October 2020. https://committees.parliament.uk/publications/3400/documents/32493/default
• Vasileiou E ,
• Simpson CR ,
• Health Data Research Innovation Gateway
• ↵ Principle trial. www.principletrial.org
• Hippisley-Cox J ,

Welsh Government

Join Health Data Research UK advisory board

Do you have an opinion on how health data should be used for research? Interested in sharing your views to shape Health Data Research UK's work?  

Health Data Research UK (HDR UK) is looking for up to nine new members, including a Chair and Deputy Chair, to join its Public Advisory Board (PAB) to provide the patient and public perspective on the use of health data in research for public benefit. Aisha Kekere-Ekun, Public Advisory Board member says:

Being part of the Public Advisory Board has been such a unique experience. It’s a very strategic role that relies on you drawing from your prior knowledge and experience to give feedback and come up with new ideas."

Aisha has been on the PAB for almost a year and helped design questionnaires to learn more about patient and public involvement and engagement (PPIE) strategies as well as filmed videos explaining her views on different projects. Aisha and other members of PAB provide feedback on presentation from PhD students, research staff and senior members of the organisation. You can read more about Aisha's experiences here.

HDR UK's goal is to unite the UK’s health data to enable discoveries that improve people’s lives. Their  Public Advisory Board  has been in place since January 2019 to help with ensuring that their work is driven to deliver benefits to patients and the public.

If you have an opinion on health data research, joining the Public Advisory Board could be the perfect fit for you.

Find out more about:

Chair of PBA role 

Deputy Chair of PBA role

PBA member role 

Find out about how to apply and if you have any additional questions or would like to find out more about any of the roles email HDR UK's  Involvement team. 

Deadline: 21 November, 13:00

Share this page

The Alliance celebrates 5 years! Explore some of the Alliance’s key successes to-date          Read more

The UK Health Data Research Alliance (the 'Alliance') is an independent alliance of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale.

The Alliance marks its fifth anniversary

Five years of the Alliance: the story so far

Seven new members join the UK Health Data Research Alliance to transform future health and care

Data Access and Governance

Improving transparency in data use

Data Standards and Quality

The Health Data Research Innovation Gateway

About our members.

The Alliance members work together to offer an exceptional opportunity to provide access to rich and diverse health data for research and innovation in a trustworthy and ethical way.

100 Alliance Members

A snapshot of some of our members...

Our members represent the UK’s major NHS organisations including NHS trusts, research charities, institutes and registries, bringing high value datasets, new approaches to developing tools and techniques for data research at scale to make improvements to people’s lives through research.

Get in touch