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

The hubs have the potential to improve outcomes and help patients enjoy longer and healthier lives

The University of Birmingham will play a key role in new data hubs that will enable cutting-edge research for health discoveries and aim to give patients across the UK faster access to pioneering new treatments.

Led by Health Data Research UK, the 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 and help 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. 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.

Of the seven new hubs being introduced nationally, two will be led by University of Birmingham experts. Dr Elizabeth Sapey, of the University of Birmingham’s Institute of Inflammation and Ageing, will be Director of the PIONEER Health Data Research Hub for Acute Care. Meanwhile, Honorary University of Birmingham Professor Alastair Denniston, a Consultant Ophthalmologist at University Hospitals Birmingham NHS Foundation Trutst, will be Director of INSIGHT Health Data Research Hub for Eye Health.

PIONEER will collect, connect and curate health data from community health teams, ambulance service and hospitals when adults and children become acutely unwell. It will allow innovative healthcare companies to develop, test and deliver new ways of caring for acutely unwell people, in partnership with NHS service providers and health researchers.

Dr Sapey said: “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.”

Meanwhile, INSIGHT will focus on eye disease and its application to wider health, including diabetes and dementia. It will use anonymised large-scale data and advanced analytics, including artificial intelligence, to develop new insights in disease detection, diagnosis, treatments and personalised healthcare.

Professor Denniston, also of the University of Birmingham’s Institute of Inflammation and Ageing, said: “Sight is the most precious of all the senses and yet in the UK around two 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.”

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.

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 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.”

Ends

For more information please contact Emma McKinney, Communications Manager (Health Sciences), University of Birmingham, tel: +44 (0) 121 414 6681, or contact the press office on +44 (0) 7789 921 165.

Notes to editors:

 

About PIONEER Health Data Research Hub for Acute Care:

By integrating information about how acutely unwell people access and use health services, such as from community health, the ambulance service and hospitals, PIONEER will allow innovative healthcare companies to develop, test and deliver advances in clinical care.
Acute care is a catastrophic NHS burden, complex in scope but rich in innovation opportunities. Each year the NHS provides 110 million urgent patient contacts, with numbers of people seeking unplanned medical help and admission to hospital rising. Current healthcare systems struggle to meet demand, causing long delays in emergency departments and difficulty accessing primary care services. Emergency admissions costs are vast; £17billion in 2017.
Despite extraordinary demand and cost, acute care has seen fewer advances in how patients access medical help; the medical assessments they undergo; the therapies they receive; and how patients are monitored compared to other areas of healthcare. This lack of innovation reflects the lack of integrated information we have about people during acute illnesses.
Gary Price, Public & Patient Advisory Group (PPAG) Lead for PIONEER, said: “Due to the very nature of ‘accident and emergency’, accessing acute care is often a stressful experience for patients.
“By being able to collate data on a vast scale, the PIONEER hub will help improve services for people in need, and our large and experienced PPAG team will ensure that every development has patient experience at its core.
“In parallel, our PPAG will ensure complete safety and security of patient data, building public confidence and trust in our management of the database and the research that results from it. The voice of patients will be heard at every stage.”

About INSIGHT Health Data Research Hub for Eye Health:


There is an increasing demand for ‘big data’ to enable innovation in health technologies and improve patient care. INSIGHT creates an NHS-academic-industry partnership to make anonymised datasets accessible and provide critical services that respond to user needs (patients/industry/other), including ‘real-world evidence’ and ‘smart’ clinical trials for new drugs or devices, and accelerating AI-algorithm development for the NHS and beyond.
INSIGHT is focused on eye disease and its application to wider health, including diabetes and dementia. INSIGHT turns routine eye imaging - currently more than 25million per year in the UK - into an exceptional asset for innovation as a convenient, uniquely valuable health snapshot.
INSIGHT uses anonymised large-scale data and advanced analytics to bring new clinical insights: from detection, diagnosis and referral, to new treatments and personalised healthcare. INSIGHT unlocks this opportunity by pairing unique anonymised data assets to hubs of expertise where patients and clinicians can, with industry, more efficiently explore the safety and use of new AI systems. This will accelerate the pace with which AI is able to translate to real patient benefit for the NHS and accelerate innovation across all sectors.

Dr Wen Hwa Lee, CEO Action Against AMD, who also represents Blind Veterans UK, Fight for Sight, Macular Society and Scottish War Blinded, said: “We welcome Health Data Research UK’s and INSIGHT’s ground-breaking initiative to include patients and public in transparently deciding how health data can be used. This is a great way to establish trust among all stakeholders, who can create together the future of eye health and possibly even other conditions.”

  • The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 6,500 international students from over 150 countries.
  • Health Data Research UK is the national institute for health data science. Its mission is to unite the UK’s health data to make discoveries that improve people’s lives. It is funded by UK Research and Innovation, the Department of Health and Social Care in England and equivalents in Northern Ireland, Wales and Scotland, and leading medical research charities. 
  • UK Research and Innovation (UKRI) brings together the UK Research Councils, Innovate UK and Research England into a single organisation to create the best environment for research and innovation to flourish. The vision is to ensure the UK maintains its world-leading position in research and innovation. 
  • The Health Data Research Hubs are part of a £37.5million government investment to create a UK-wide capability for the safe and responsible use of health-related data at scale for research and innovation (the Digital Innovation Hub Programme). Led by Health Data Research UK, on behalf of UK Research and Innovation, it is funded by the Industrial Strategy Challenge Fund, a key part of the modern Industrial Strategy, and its Data to Early Diagnosis and Precision Medicine Challenge. The overall programme incorporates three layers: (i) the UK Health Data Research Alliance; (ii) the Health Data Research Hubs; and, (iii) the Health Data Research Innovation Gateway.

The seven hubs:


The seven new hubs are partnerships of organisations based across the UK as shown in this interactive map:

  1. BREATHE – Health Data Research Hub for Respiratory Health – which will enable high quality research and cutting-edge innovation to improve the lives of people living with respiratory conditions, such as asthma and chronic obstructive pulmonary disease (COPD) in the UK. 
  2. DATA-CAN – Health Data Research Hub for Cancer - aims to transform how cancer clinical data across the UK can be used to improve patient care. 
  3. Discover-NOW – Health Data Research Hub for Real World Evidence – which will work with de-identified data from the NHS in London and Manchester, with appropriate controls and consent, to support research to find new ways to diagnose and treat disease and make care for patients better and safer. 
  4. G.I. Know – Heath Data Research Hub for Inflammatory Bowel Disease – which will use data to address the urgent need to better understand why patients with Crohn's Disease and Ulcerative Colitis respond differently to treatments in order to improve people’s outcomes and reduce costs in the NHS.
  5. INSIGHT – Health Data Research Hub for Eye Health – which is focused on eye disease and its application to wider health, including diabetes and dementia. It will use anonymised large-scale data and advanced analytics, including artificial intelligence, to develop new insights in disease detection, diagnosis, treatments and personalised healthcare. 
  6. NHS DigiTrial - The Health Data Research Hub for Clinical Trials – which will focus on the development of a foundation service to improve the assessment of clinical trial feasibility, supporting improved planning and delivery of clinical trials in the UK. 
  7. PIONEER – Health Data Research Hub for Acute Care - By integrating information about how acutely unwell people access and use health services – such as from community health, the ambulance service and hospitals, PIONEER will allow innovative healthcare companies to develop, test and deliver advances in clinical care.