Virtually everyone in the UK experiences a respiratory illness at some point in their lives. One in five of the population also has a long term respiratory condition. At the moment, our respiratory outcomes in the UK are unfortunately substandard compared with many other high-income countries. We need to do something dramatically different for this to improve.
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 care for the benefit of all – but these are currently often difficult to find, access and use.
The BREATHE Health Data Research Hub will help navigate respiratory health datasets from across the UK; creating a digital resource where trained, approved experts can access respiratory data on an unprecedented scale and transform respiratory health for people from all areas of the country.
Working directly with members of the public, including representatives embedded in our leadership team, is a vital component to ensuring that patients and the public remain at the heart of this initiative. ‘Big data’ has often been in the media for the wrong reasons in recent years – with justifiable concerns raised by individuals and groups about inappropriate or unwanted use of their personal data. We will ensure that as we bring these health datasets together, the security and the core purpose of transforming health for people across the UK remain central to all activities. Our experienced public representatives, and wider engagement activities, will enable us to build trust between patients, academic, our charitable sector and industry partners to achieve the best insights for health care that we can.
The University of Edinburgh is delighted to be leading the BREATHE Hub, and working with partners across the UK in academia, the third sector and industry. BREATHE partners include Imperial College London, Nottingham University Hospitals NHS Trust, Swansea University, University of Leicester, Queen Mary University of London, King’s College London, Asthma UK, British Lung Foundation, NHS Waltham Forest Clinical Commissioning Group, Greater London Authority, Respiri Ltd, StormID, Tiny Medical Apps, Novartis Pharmaceuticals UK, BreatheOx, GE Healthcare Finnamore Partners and Optimum Patient Care. A vital part of the success of the hubs is demonstrating how the partnership between these sectors can provide valuable developments that can be fed back into the NHS, and ultimately benefit patients through better treatments or management of acute and long-term conditions.
In launching these new Health Data Research Hubs, HDR UK are providing a fantastic opportunity to build exemplars of the power of data to transform people’s lives. We are delighted to be focussing on respiratory health here at BREATHE.