Celebrating one year of BREATHE – The Health Data Research Hub for Respiratory Health
As we reach the one year milestone, Katie Kissick, BREATHE Chief Operating Officer, celebrates some of our key achievements.
It’s been a busy year since the launch of the Health Data Research Hubs in October 2019, in an ever-changing landscape.
The COVID-19 pandemic continues to have a significant impact across the world, and our role as the Health Data Research Hub for Respiratory Health has arguably never been more important.
A growing team and international network
As a new entity, this initial phase has involved establishing essential processes to ensure the smooth running of the Hub, as well as embedding our team and recruiting additional staff to manage the growing level of activity. The BREATHE team now includes over 40 staff based across the UK.
Connections made through our wider network continue to develop, with new collaborations and partnerships being formed at both a national and international level. It’s fantastic to see such enthusiasm from across the community, with a clear drive and ambition to realise the full potential of health data for better respiratory health.
Working with patients and the public
We believe that our partnership with patients and the public is fundamental to improving our work and strengthening our impact. With this in mind, we have established lay input across our External Advisory Board, Executive Team and Scientific Committee. This helps us to focus on research and activities which will have the biggest impact on respiratory health.
In addition, applications to access BREATHE data via our Trusted Research Environment, SAIL Databank, are reviewed by members of the public – ensuring health data is used in a safe and responsible manner.
Improving the visibility and use of respiratory data
One of our key priorities at BREATHE is to improve the visibility of, and access to, respiratory data. We do this by working with the Health Data Research Innovation Gateway – a portal providing a common entry point to discover and enquire about access to health datasets for research and innovation.
Thanks to our hard-working team, BREATHE has now published information on 48 datasets through the Gateway – the largest of any Hub – with many more in development. Working with our data partners, we hope to see this figure rise to over 90 in the coming weeks.
Great strides have also been made to improve the quality of data, through the development of definitions and codes used to record respiratory conditions in routinely collected healthcare data – an extremely valuable source of existing information.
Responding to COVID-19
One of our primary activities this year has been managing secure and ethical access to de-identified data from the C-19 Symptom Study app, developed by King’s College London and ZOE.
As of last week, 40 projects have been approved to access the de-identified data and are underway, with a further 72 in development. Enabling wider access to data from the app is informing local responses to the pandemic across the UK, and catalysing further research as we seek to learn more about this new virus and its impact.
BREATHE has also contributed to a cross-UK collaboration of researchers, who are using the app data to provide near real-time mapping and predictive modelling to the devolved governments of Wales, Scotland and Northern Ireland, and feeding this back in to the SAGE UK government committee.
Elsewhere, the Hub and its members are supporting several key COVID-19 studies across the UK, looking at topics including the long-term health impacts of hospitalised patients (visit the PHOSP-COVID website), why people from BAME backgrounds are disproportionately affected (visit the EXCEED website), the risks of COVID-19 for ethnic minority healthcare workers (visit the UK REACH website), and using patient data to track the progress of the virus in near real time across Scotland (visit the EAVE II website).
We’ve made a huge amount of progress over the past year, with plenty more to come from our growing network. If you’re interested in finding out more about BREATHE and how you can get involved, we’d be delighted to hear from you.