Lead organisation: The University of Edinburgh
Hub Director: Professor Aziz Sheikh, email Aziz.Sheikh@ed.ac.uk
What is the problem?
Everyone in the UK will have a respiratory illness at some point in their life. We have the best datasets in the world – which should be used to improve respiratory health – but these are currently very difficult to find, access and use.
What do we want to do?
People in the UK deserve the best respiratory health. We want to make respiratory health better by changing the way the NHS, pharmaceutical companies, charities and researchers use data.
How will we do it?
We will create a Hub (called BREATHE) where trained, approved experts can access respiratory data to benefit patients and the public. We will make it easier for experts to use data in safe and secure ways.
How will this benefit patients?
BREATHE will support high quality research and cutting-edge innovation that will improve the lives of people living with respiratory conditions in the UK. It is important that patients and the public are involved with this project throughout, including from the very start. This is why there are patient and public members living with respiratory conditions who have worked with us on developing this.
Professor Aziz Sheikh, Director, BREATHE, said:
“Approximately 12.7 million people report a history of long-standing respiratory illness and respiratory disorders are the third leading cause of death. Lung diseases account for 10% of all inpatient bed-days, cost the NHS £11billion/year and society over £70billion/year.
Despite having the richest respiratory datasets in the world, data are fragmented, inconsistently structured and cumbersome to access, severely limiting their utility.
BREATHE aims to transform the UK’s respiratory health through creating Findable, Accessible, Interoperable and Reusable (FAIR) respiratory rich datasets; providing expert support to catalyse their responsible use in respiratory research and innovation. Through so doing, we aim to position the UK at the forefront of digitally-enabled respiratory health.”
Olivia Fulton, Patient Representative Lead, BREATHE, said:
“So many across the UK have or have had respiratory issues. BREATHE is an exciting step forward in respiratory research improving access to reliable and usable data sets to help better understand the conditions that affect so many like me. BREATHE has recognised the value of patients and the public. I am proud to be one of 2 patient representatives in the Leadership team for BREATHE meaning that we can voice any concerns and ensure that data is being used responsibly and securely. The work of BREATHE can only benefit those affected by respiratory conditions across the UK.”
Partners involved in BREATHE: The University of Edinburgh (lead institution) | Imperial College of Science Technology and Medicine | Nottingham University Hospitals NHS Trust | Swansea University | University of Leicester | Queen Mary University of London | Kings College London | Asthma UK | British Lung Foundation | NHS Waltham Forest Clinical Commissioning Group (on behalf of One London LHCRE) | Greater London Authority | Respiri Ltd | StormID | Tiny Medical Apps | Novartis Pharmaceuticals UK | BreatheOx | GE Healthcare Finnamore Partners | Optimum Patient Care