Pioneering data research centres to enable cutting-edge research and innovation to benefit UK patients

  • Seven new data hubs will be rolled out across the UK to speed up research for new medicines, treatments, and technologies that support quicker diagnoses and save lives
  • Two of the seven will be led by Birmingham researchers working with national partners to connect and analyse data safely and securely
  • Patients and the public will be involved in decisions about how their data is used and accessed

Pioneering data hubs that enable cutting-edge research for health discoveries and aim to give patients across the UK faster access to pioneering new treatments will be rolled out next month.

Led by Health Data Research UK, these hubs aim to improve the lives of people with debilitating conditions, and will link up different types of health data and make it more easily accessible and user-friendly for research, while maintaining strict controls around data privacy and consent. 

The potential benefits to patients include earlier diagnosis, the development of more effective treatments and more efficient management of the health service, all of which have the potential to improve outcomes, helping patients enjoy longer and healthier lives. 

Patients, researchers and clinicians will work together to explore the safe and ethical use of health data for research into specific diseases including cancer, Crohn’s disease and asthma.  They will also enable access to data for trialling new treatments and support improvements in clinical care.  Patients will be involved in decisions about how their data is used to ensure the benefits are returned to the NHS and the wider UK community, 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 UK Government Industrial Strategy Challenge Fund (ISCF) announced in November 2017 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.  The hubs will also stimulate further economic growth through greater research activity.

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

Over 100 organisations from the NHS and universities to charities and technology and pharmaceutical companies across the UK are involved in the hubs.  The aim is to bring their collective expertise together to maximise the value of health data research potentially benefiting millions of people across the country.

The two hubs to be led by Birmingham researchers with national partners are:

      • PIONEER, an acute care hub that 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
      • INSIGHT, an eye health hub 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
They will be joined by: 
 
      • A cancer hub that aims to transform how cancer data from across the UK can be used to improve patient care, diagnose the disease earlier, and enable people to access innovative new medicines, potentially contributing to saving the lives of 30,000 cancer patients a year;
      • An inflammatory bowel disease hub 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 clinical trials hub to increase opportunities for patients to participate in clinical trials
      • A respiratory hub that aims to improve the lives of people with respiratory conditions, such as asthma and chronic obstructive pulmonary disease (COPD)
      • A hub that aims to use real world data to improve understanding of many long-term conditions, starting with Type 2 Diabetes, finding new life saving treatments by using advanced technologies and artificial intelligence, and even preventing them altogether.

> WATCH: PIONEER leads outline the vision for the Health Data Research Hub for Acute Care

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> WATCH: INSIGHT leads outline their plans for the Health Data Research Hub for Eye Health

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“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 secure 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.”
Professor Andrew Morris
Director of Health Data Research UK
"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, scrutinising how the data is to be used and ensuring public trust remains at the heart of this important work."
Sarah Brooke
Public Advisory Board Member at HDR-UK
“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.”
Natalie Banner
Lead for Understanding Patient Data