At BREATHE, our aim is to improve respiratory health by transforming the way data are utilised and accessed across the NHS by researchers, industry, charities, and policy makers. The UK has some of the best health datasets in the world, but these can be difficult to find, access, navigate and therefore to ultimately use.
One of the biggest issues with respiratory data, whilst it is abundant, is that it is derived from a variety of sources, so it is rarely coordinated or shaped in a coherent way. Data often exists within silos, is held by different institutions and organisations, and is not shared efficiently or easily. Additionally, people do not always understand the most effective and accurate ways to use even the routine clinical data sources they have at their fingertips.
As one of seven Health Data Research Hubs in the UK, BREATHE was set up in 2020 to help to solve this problem, by signposting and facilitating access to existing respiratory data sets in the UK, in addition to facilitating linkage to new datasets and providing expertise to assist people in accessing these data, creating a one-stop-shop for the Health Service, academia, charity, and industry.
There are currently 97 datasets under the BREATHE respiratory collection, which comprise datasets across the UK and internationally, that have either been published on the Health Data Research Innovation Gateway by BREATHE on behalf of our data partners, or directly by our partners and other Health Data Alliance members with whom BREATHE has close ties.
By working together to identify and signpost individuals to respiratory data that already exist, we can help develop a broader understanding of the issues within the respiratory ecosystem and better enable innovation and research to take place. We are continually working to discover, catalogue and list details of existing respiratory data sets on the Health Data Research Innovation Gateway, so it is easier to see what is already out there.
Some examples of our work:
- Through our partnership with our Trusted Research environment, SAIL Databank – which provides a safe environment for data analysis, data hosting and sharing - we can facilitate linkage with NHS health records to bring additional insights. Recently we partnered with the Cystic Fibrosis Trust to enable linkage of the CF registry to routine hospital data to increase the visibility of the Registry data set and enable researchers to access more easily integrated records. SAIL is also facilitating UK-wide linkage with our technology and data protection expertise, for national urgent public health studies such as UK REACH and COVIDENCE, to provide centralised linked health records and cohort data for wider scientific use.
- We serve as a resource to the wider respiratory community by providing expertise on the most effective and efficient ways to use existing data and how to analyse it. To this end we have led the development of a standard set of codes to allow identification of phenotypes in routine data sources covering asthma, COPD, Bronchiectasis and Cystic Fibrosis, which will enable the use of routinely collected healthcare data in quality research and ultimately deliver benefits back to UK patients. Routine primary care data from GP computer systems is incredibly useful because it is constantly updated, meaning it can provide a real-time picture. However, difficulties lie in how information is recorded and how treatments and metrics change over time. For instance, some of the treatments we have now for conditions such as severe asthma did not exist 10 or 15 years ago, so the condition is coded and recorded differently.
- During the COVID-pandemic, using data from a variety of sources, BREATHE has been working with the Governments and Public Health Departments from across all four nations and has been at the forefront of influencing how the UK has responded to the pandemic. This work is still on going and for example we are currently we are heavily engaged with monitoring the effectiveness of the COVID19 vaccination rollout.
- For decades, respiratory data has lagged behind in comparison to other diseases, such as cardiovascular disease and cancer. Effective and well-maintained national data sets for cancer have existed for a long time, which has led to progress in the way people are treated and diagnosed. We are talking to various stakeholders to attempt to address this and flagging up the potential for how bespoke respiratory datasets that are ready to be analysed would improve the respiratory health of the UK by allowing questions to be answered faster and at high quality.
We are keen to hear from the respiratory community
Since the Hub was set up, we have been able to expand on the existing knowledge base, informing people how to use the data in ways which will present the best outcomes. We have now started to link data together, taking existing data sets and mapping out the potential relationships between them to answer questions as they emerge. It has been exciting to partner with people across industry, within academia and the NHS, to kickstart solutions to existing issues within the respiratory sector. We are keen to talk to BTS members – clinicians, scientists, and academics alike who are interested in working in this area. Particularly we would love to talk to you about how to access the data sources, data sharing and research opportunities