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

12 September 2019

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, the seven 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.

Two of the seven will be led by Birmingham researchers working with national partners to connect and analyse data safely and securely. The two hubs 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.

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 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,” said Professor Andrew Morris, Director of Health Data Research UK.

“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.”

Prof Alastair Denniston, Director of INSIGHT, said: “Sight is the most precious of all the senses and yet in the UK around 2 million people live with sight loss. As an eye doctor, I am dedicated to working with the whole community to improve treatments for people with sight-threatening conditions like age-related macular degeneration and diabetic eye disease.

“I have also seen how our incredible imaging technologies can be used to identify and predict diseases beyond the eye such as dementia or heart disease. INSIGHT is about using the power of health data and the development of artificial intelligence solutions to tackle blinding diseases and other serious conditions.

“INSIGHT will be a resource that will accelerate our understanding of disease and enable us to detect disease earlier, personalise care and accelerate the development of new therapies.”

Dr Elizabeth Sapey, PIONEER Hub lead, added: “One of the greatest threats facing the NHS is the failure to meet demand for acute care – which is any unplanned healthcare contact, such as visiting A&E.

“Through a broad Midlands NHS and University partnership, we will develop a bespoke, curated database of all patient interactions with acute care providers, which will be used in two ways – firstly, to provide accurate, real-time data for capacity planning and improving patients’ experience.

“Secondly, it will create a complete map of innovation need from which we can identify areas for research and development of new diagnostics, therapeutics and digital health interventions. Essentially, the PIONEER hub will close the health data loop from home, to community services, to hospital services, to the community.”

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.