BREATHE - The Health Data Research Hub for Respiratory Health

Lead Research Organisation: University of Edinburgh

Abstract

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 proposal and who are committed to delivering BREATHE’s goals."

Technical Summary

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.
Our vision is 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. We will position the UK at the forefront of data driven innovation; creating a ‘one-stop’ service for trustworthy, multi-stakeholder utilisation of curated respiratory data for public, private and third sector benefit. Our UK-wide consortium provides the necessary expertise. Our priorities have been co-developed with patients, the public, industry and med-tech partners; together we have identified
major opportunities for early, high-profile, case studies.
BREATHE will initially focus on asthma and COPD, including respiratory infections, addressing three main themes of crucial importance to the UK life sciences sector:
1) Drug discovery and pharmacogenetics;
2) RWE to improve healthcare systems;
3) Digitally enabled trials
New data assets will be made available to the UK Health Data Research (HDR) Alliance and through the HDR Research Innovation Gateway. We will create a UK Respiratory Data Library (with metadata catalogue), curate and link data, and provide open-source algorithms to support secure analyses thereby enhancing the interoperability of datasets. This expandable platform will for example, enable the incorporation of data from wearable sensors into NHS apps to transform respiratory health, supporting rapid evaluation of new drugs and devices in real-world settings, and yielding evidence to underpin policy initiatives.
BREATHE will support stakeholders to securely use data to meet their diverse needs. We will work proactively with other Digital Innovation Hubs (DIH) to enhance the UK’s competitiveness.
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Publications

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