What does the Hub do?

1 in 5 people across the UK has a long-term respiratory condition.

We are fortunate in the UK to have some of the best health data sets in the world, which can offer opportunities to transform health and care – but these are often difficult to find, access and use.

At BREATHE, we want to improve respiratory health by changing the way the NHS, researchers, industry and charities use data. We are doing this by:

  • Bringing together useful respiratory datasets, so they can be easily discovered by researchers and innovators.
  • Curating and improving these datasets, providing access to the highest quality data.
  • Providing services and expertise to drive the use of health data in ground-breaking research and innovation.
  • Working in partnership with patients and the public to promote the responsible use of health data for patient benefit, protecting privacy at all stages.

How does the Hub operate?

BREATHE is a collaboration with patients and publics, UK Universities, third sector, Government organisations and industry from across the UK and globally.

The Hub is led by The University of Edinburgh, Imperial College London, University of Leicester, Nottingham University Hospitals NHS Trust, Queen Mary University of London and Swansea University. SAIL Databank is the primary Trusted Research Environment for BREATHE.

BREATHE works at the interface of respiratory health and data science. Our activities fall under three priority themes:

  • Drug Discovery and Pharmacogenomics: enabling relevant datasets to be Findable, Accessible, Interoperable and Reusable (FAIR), and providing expert support to catalyse their use in respiratory research
  • Real World Evidence: facilitating the better use of real world evidence for respiratory care
  • Digitally Enabled Trials: promoting the design and delivery of trials which encourage the use of digital technologies to enhance efficiency.

Who are the Hub services for? 

At BREATHE, we are passionate about health data and enabling others to utilise its full potential.

We can work with you to help enable future and more extensive value from your existing data sets, and on ground breaking research and innovation to improve respiratory health. We also offer an established, secure system for data storage, working in partnership with our Trusted Research Environment, SAIL Databank.

We work with a range of organisations and individuals, including academic researchers, charities and third sector organisations, SMEs and larger industry partners.

Our initial priority is to focus on how we can enable quicker and more efficient access to high quality respiratory data sources and expertise to:

  • Improve patient care pathways by working with the NHS and social care partners.
  • Streamline the clinical trials processes and support academic partners to deliver high quality clinical trials.
  • Aid the biotech industry to create jobs and stimulate the UK economy.

How does the Hub benefit patients and the public?

We believe health data has a crucial role to play in the improvement of respiratory health in the UK. As such, it’s extremely important to us to have patient and public input at all stages and levels of BREATHE activity.

From the seed of an idea, to establishing and growing the Hub, patients and members of the public have been involved in BREATHE every step of the way. This partnership is fundamental to improving our work and strengthening our impact.

Both our External Advisory Board and Executive Team include lay representation, ensuring that the strategic direction of the Hub continues to be shaped and guided by patients and the public.

All applications to access BREATHE data via our Trusted Research Environment, SAIL Databank, are reviewed by members of the public. They help us to focus on research which will have the biggest impact on respiratory health in the UK.

Hub Collection: https://web.www.healthdatagateway.org/collection/420201816349588

Website: https://www.ed.ac.uk/usher/breathe 

Twitter: @BREATHEdata