HDR UK’s vision is to unite the UK’s health data to enable discoveries that improve people’s lives. So, we fully welcome the recommendations of the Commission in relation to the use of data for research (recommendation 6).
The Commission highlights the importance of coordinating pre-existing data authorities across the UK by mapping existing data collection, ensuring that data standards are met, linking datasets, and assessing current and future needs of health and care data.
We welcome the Commission’s suggestion that the UK Statistics Authority and Health Data Research UK are potential candidates to deliver its recommendations. We also agree that efforts to deliver strategies for health and care data that are specific to each country and system will still be relevant but should be complementary to a strategy across the UK.
Working in partnership, including with the NHS and the Office for National Statistics, we are making important UK-wide progress, including:
- The development of the UK’s unified platform to discover and access health datasets for research and innovation – The HDR Innovation Gateway includes over 80 datasets from across the NHS and provides a map for the existing data collection across the NHS and all four nations of the UK
- Working in conjunction with NHS Digital we have created a linked data resource covering nearly 55 million people, over 96% of the English population (and is being extended to 67 million people) that allows researchers to access health data at scale to a previously unimaginable level
- Providing the first national insights into the effectiveness of Covid-19 vaccines by enabling safe and secure access to vaccination, primary care, COVID-19 testing, hospitalisation and mortality records for 99% Scottish population (5.4M people), through the Scottish National Safe Haven
- The development of a unique partnership model for seven data research “Hubs” working with NHS, academia and industry to provide services that improve and deploy health data
- Working with NHS Digital (and the DigiTrials Hub) to enable rapid recruitment that has supported data-enabled clinical trials on Covid-19 such as RECOVERY and PRINCIPLE.
In just three years HDR UK has developed the health data research infrastructure, partnerships across the sector and a community of researchers for the use of health data at scale. The use of health data has been one of the positive outputs of the UK’s response to the Covid-19 pandemic – this is just the tip of the iceberg of what can be achieved.
So, the timing of the Commission’s recommendations on the potential for use of health data are prescient. Health Data Research UK is ready to answer the call to deliver on these, working with patients and the public, to support the NHS’s development and the UK’s position as a global leader in health data science.
David Seymour, Executive Director, UK Health Data Research Alliance:
“Of the 50 members of the UK Health Data Research Alliance – the partnership led by HDR UK creating a unified approach to the use of health data and data standards across the UK – 15 are NHS organisations and Trusts. To work towards achieving recommendations from this Commission, we encourage other parts of the NHS and the sector to join us on this journey.”
Angela Coulter, Chair of Health Data Research Public Advisory Board:
“The pandemic has shown what can be achieved when researchers analyse routine NHS data to improve understanding of patients’ experiences and outcomes. Applying those techniques on an even wider scale to address post-pandemic challenges is the key to service transformation and is now an urgent priority.”
Professor Aziz Sheikh, Director of Usher Institute and Dean of Data at the University of Edinburgh and Director of BREATHE – the Health Data Research Hub for Respiratory Health:
“We need to use the UK’s outstanding health data assets to improve all aspects of healthcare planning, prioritisation, service delivery and personalisation of care. We have, after much effort, made important progress in this respect in relation to the battle against COVID-19, which is now reaping dividends for us all as we begin to return to a degree of normality. It is vital that these same data infrastructures and data assets are now also deployed to improve patient outcomes from other conditions such as cancer, heart disease and asthma.”
Chief of Staff (interim) and Alliance Executive Director, HDR UK at Health Data Research UK (HDR UK)
David Seymour joined Health Data Research UK (HDR UK) in June 2019 to lead the development of the UK Health Data Research Alliance (the ‘Alliance’) and other strategic partnerships. He is...
Chair of Public Advisory Board
Angela Coulter is an NHS patient and a health services researcher with experience in studying patient and public views of healthcare, their experiences and outcomes, for which she has an...
Chair of Primary Care Research and Development, Usher Institute at The University of Edinburgh
Aziz Sheikh is Professor of Primary Care Research & Development and Director of the Usher Institute at The University of Edinburgh. He is Honorary Consultant in Paediatric Allergy at the Royal...