UK patients living with debilitating and life-threatening conditions to benefit from new data research centres

• Seven data hubs to be set up across the UK to speed up research for new medicines and treatments, support quicker diagnoses and potentially save lives
• The Hubs will use the latest advances in technology to connect and analyse health data from existing locations like the NHS and ensure data is kept safe and secure 
• Patients and the public will be involved in making decisions about how data is used

Data hubs set up across the UK from October this year will enable cutting-edge research for health discoveries and aim to give patients across the UK faster access to pioneering treatments.

Led by Health Data Research UK, these hubs are the first of their kind in the world and will safely link up different types of health data and make it accessible and usable for research.  The hubs aim to improve the lives of people with debilitating conditions and could have life-saving potential, whilst creating new jobs and generating investment in the UK by meeting the needs of researchers.

Patients, researchers and clinicians will work together in the hubs to explore the safe and ethical use of health data for research into specific diseases (such as cancer, Crohn's disease and asthma), trial new treatments and support improvements in clinical care.  Patients will be involved in decisions about how data will be used to ensure the benefits are returned to the NHS and people across the UK and existing rules for accessing data safely and securely will continue to apply.

The Health Data Research Hubs are part of a four-year £37million investment from the Government Industrial Strategy Challenge Fund (ISCF), led by UK Research and Innovation, to create a UK-wide system for the safe and responsible use of health-related data on a large scale.  

Over 100 organisations are involved in the hubs from the NHS, universities, charities and companies from the technology and pharmaceutical sectors across the UK.  They are bringing their collective expertise to maximise the value of health data research with the potential to benefit millions of people across the UK.

The seven hubs include:

• A hub for cancer that aims to save the lives of over 30,000 cancer patients a year by transforming how cancer data from across the UK can be used to improve patient care, diagnose cancer earlier, and enable people to access innovative new medicines  
• A hub for eye health that will use data and advanced analytics, including artificial intelligence, to develop new insights in eye disease and how this applies to wider health such as dementia and diabetes
• A hub for inflammatory bowel disease that will use data to address the urgent need to better understand why patients with Crohn's Disease and Ulcerative Colitis respond differently to treatments
• A hub for acute care will use data from community health, the ambulance service and hospitals to enable innovative healthcare companies to develop, test and deliver advances in clinical care.

The hubs were selected following an open competition by an independent panel involving patient and public representatives.  Each was assessed against criteria that included the potential for impact, the innovative uses of data, patient involvement and the value for public funding.  

Professor Andrew Morris, Director of Health Data Research UK, said:

“The UK is home to some of the world’s leading researchers and innovators who have historically struggled to access large scale data about people’s health.  Creating these hubs and the wider infrastructure will, for the first time, give researchers the opportunity to use data at scale to research the genetic, lifestyle and social factors behind many familiar common diseases and identify revealing data trends which may help with finding cures or treatments. 

With a clear focus on data security, safety and public involvement, this is an important and exciting next step in the UK’s health data proposition and builds on the fantastic strengths we have across our health service, universities and industry.”  

Sarah Brooke, Public Advisory Board member at Health Data Research UK, said: "The Public Advisory Board were keen to be involved in the selection process to raise awareness of the importance of public engagement and involvement in the Hubs. We see the Hubs playing a key role in engaging with the public about their work, raising public awareness of using data in research and ensuring public trust remains at the heart this important work."

Natalie Banner, Lead for Understanding Patient Data, said: “Many people support the use of patient data for research but are understandably nervous about the involvement of commercial organisations. It’s great to see the Hubs taking public and patient engagement seriously as they meet this challenge of driving innovation while protecting peoples’ rights and interests over data.”