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.”
This communication was first published 19 September 2019.