Respiratory data in the time of COVID-19: Things that took years before now take weeks.

By Professor Jennifer Quint, Deputy Director, BREATHE – The Health Data Research Hub for Respiratory Health

One of the big issues with respiratory data in the UK is that a lot of data exists on lung health, but it is rarely coordinated or shaped in a coherent way. It can also be difficult to find, access and use. Lung health data often exists across different organisations and isn’t always shared between them. On top of this, people don’t always understand the best ways to use even the very routine data we have available on respiratory care. BREATHE was founded to solve this problem. By unifying and signposting to relevant data, we can work with the Taskforce for Lung Health to ensure that people with lung conditions receive the best possible care.

As one of seven Health Data Research Hubs in the UK, BREATHE was set up to signpost and facilitate access to existing respiratory data sets in the UK, creating a one-stop-shop for researchers and analysts across the country. We’re working with Health Data Research UK to list details of available respiratory data sets on the Health Data Research Innovation Gateway, so it’s easier to see what’s already out there. We provide expertise on the most effective ways to use existing data and how to model this data in a variety of different ways. An example of this might be by using electronic healthcare records to work out how to best identify disease within them.

BREATHE is at the centre of tackling the challenges that come with respiratory data, working with the government, the devolved nations and the Taskforce for Lung Health.  For the Taskforce, having access to the most up to date information means that they can work to influence NHS England in meaningful ways, with any changes they propose backed up by the numbers.

There are many challenges in analysing respiratory data

One of the big issues we’re now addressing is the fact that in the past, nothing was unified in terms of respiratory data. For decades, respiratory data has been lagging behind in comparison to other diseases, such as cancer. Effective and well-maintained national data sets for cancer have existed for a long time, which has led to progress in the ways people are treated and diagnosed. By working together to identify and signpost to data on lung health that already exists, we help develop a broad understanding of the issues within the respiratory sector, and enable new research to take place.

Another challenge we’re facing is that a lot of existing data sets are quite generic rather than being disease-specific. Routine primary care data, for example from GPs, is incredibly useful because it is constantly updated, meaning it can give us a more current picture of where we are now. However, it can still pose some problems.

The difficulty lies in how people record things, and how treatments and metrics change over time. Electronic routine primary care data goes back to the 1980s – that’s a lot of pre-existing data. But because record-keeping practices have changed, and the routine data can encompass so many different factors, this data may now need to be interpreted in a different way. For instance, some of the treatments we have now for conditions such as severe asthma didn’t exist 10 or 15 years ago, so the condition is coded and recorded differently. That’s where BREATHE comes in – by being able to signpost to these changes, we can now begin to unify the existing data into one coherent narrative.

We have made a lot of progress in a short space of time

In the year 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 the questions which emerge. It’s been exciting to partner with people across the industry, within academia and the NHS, to kickstart solutions to existing issues within the respiratory sector.

With the rise of COVID-19 and our lives changing so quickly and so drastically, we have seen more rapid progress than ever before in how respiratory data is shared and used across the NHS, our government and other organisations. Exchanging information can often take years due to permissions and access, but with the immediate need to address the pandemic, things have been fast tracked. Now, getting access to what we need is much faster and processes more streamlined.

We work with the Taskforce to steer which data is best for public audiences

BREATHE supports the Taskforce Lung health data tracker to answer questions about respiratory issues which are likely to be of interest to the general public. The launch of the Lung health data tracker has been exciting as it gathers publicly available data on lung health in one place, for the first time. People interested in learning about the state of lung health in the country can now have access to some of the same insights as people working in respiratory care.

Working with the Taskforce, members of the BREATHE team sit on the lung health data tracker Working Group, and advise on how the data tracker could look, consulting on what kinds of data will be relevant to a public audience now and in the future. We also help streamline the Lung health data tracker to ensure that the NHS and the Taskforce measure data in similar ways, so that the public can get the most accurate picture of lung health in the nation.

We don’t yet know what data we may need in the future

In the wake of the COVID-19 pandemic, we have all had to adapt and change the ways in which we work. To a large extent, this has meant great progress in that we have developed relationships and links between different bodies, feeding in information and getting up-to-date data. We have had to collaborate and link up ideas in ways that we never have before, working to inform government and policy, supporting SAGE and various other committees in tackling the pandemic. We have also been talking to NHS England about the Long Term Plan, discussing where the relevant data should come from what it should look like.

But as we are now working virtually, it is more difficult than ever before to know what kind of information or data we may need to improve and maintain respiratory care in the future. Despite these challenges, we are hopeful that some of the more positive outcomes which have emerged in the wake of COVID-19 will inform a more accurate picture of respiratory care in the future, and that we can maintain the speed and breadth of information sharing which we have seen develop during this challenging time.

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1 September 2020