National respiratory data hub launched by HDR UK

Seven new data hubs have been launched by Health Data Research UK to help research seeking to find new medicines and treatments.

The National Heart and Lung Institute (NHLI) is delighted that Dr Jennifer Quint is Deputy Director and Clinical Lead of the Respiratory Hub ‘BREATHE’, that is headed by the University of Edinburgh. The data hubs based across the UK aim to give patients faster access to pioneering treatments. 

Led by HDR UK, these hubs will link up different types of health data and make it accessible and usable for research.  Using the latest advances in technology to connect and analyse health data from existing locations like the NHS. Alongside the respiratory hub the six other hubs will focus on cancer, eye health, inflammatory bowel disease, acute care, clinical trials and real world data. Patients will be involved in decisions about how data will be used to ensure the benefits are returned to the NHS. 

"A vital part of the success of the hubs is demonstrating how the partnership between the two sectors can provide valuable developments that can be fed back into the NHS" Dr Jennifer Quint

Dr Quint’s research expertise in electronic health records, and what can be achieved with this data, made her the perfect fit to lead on the NHLI’s involvement. Professor Edwin Chilvers, Head of NHLI, comments “As the UK’s National Heart and Lung Institute it is key that we continue to work at a national and international level, and are involved with large collaborations, which tackle the big questions in heart, lung and vascular disease; our involvement in the HDR-UK hub is central to that ambition”.

I sat down with Jennifer to find out more about her involvement with the Respiratory Hub and what it is aiming to achieve.

How did you get involved? 

Nearly every person in the UK will experience a respiratory disease of some sort in their lives, and as a result of this NHS England features it prominently in its long term plan. However there is currently no large, long-term, collaboration looking at the data behind respiratory disease, so when HDR UK put out a call through MRC for ‘digital innovation hubs’ it seemed like a phenomenal opportunity to bring together like-minded data experts in this area. Together we are taking on the challenge of creating a large reservoir of information that can be accessed through one point of contact, to make access to this data more efficient. 

What will the Respiratory Hub – BREATHE – do?

The hub will allow access to data on respiratory disease more quickly and efficiently. The research data should also be of higher quality and it will be standardised. This standardisation will allow data collected from different studies to all be analysed at once to answer a new question, without losing the granularity from each of the initial studies. We are starting off looking at asthma and chronic obstructive pulmonary disease (COPD) but plan to expand to other respiratory diseases such as interstitial lung diseases, respiratory infections, and pneumonia.

By creating unifying definitions across databases, for instance on how researchers define their patient population, we can harmonise the data to create a single point of reference for larger studies. The idea being that industry can approach the hub and explain what they want to investigate, the hub can then facilitate their access to the relevant data sets and provide a uniform pool of information for their study. In effect the hub will provide the expertise to allow others to work with research data, by making it easier to digest, with the same terms to be used across datasets, meaning access to, and use of, the data will be more efficient.

How important is collaboration? 

Whether collaborations are bringing together different data sets to allow you to explore new avenues and questions that were previously unexplorable, or bringing together experts from across disciplines such as statisticians, clinicians and AI to share their different ideas and approaches, it’s all about getting those different minds in the same ‘room’, even virtually, to make the next leap forward in our research. I fundamentally believe that collaboration is absolutely key, there is more than enough data and ideas to go around, and the more minds we have looking at a problem the more chance we have of a breakthrough. Professor Aziz Sheikh from Edinburgh University is leading the hub and I’m excited to be part of this collaboration across London, Leicester and Edinburgh. Plus collaborating is much more fun! 

HDR UK are keen we work closely with the other hubs and I can see how beneficial this could be to all concerned. We could clearly have links to the Acute Medicine Hub based in Birmingham, as so many respiratory diseases contribute to acute admissions to hospital. I can also see us working with the Real World Data hub or Clinical Trials hub, we could provide information on how respiratory data in their trials is categorised for example. There are certainly lots of opportunities for collaboration. This is all about an outward facing knowledge base, providing learning and data to bring people together to work on key areas in healthcare.

How are patients involved?

Patients are totally key to getting this to work, as firstly it is their data we are using, and secondly it is important we build that trust between patients and industry to achieve the best insights for healthcare that we can. The hubs are in effect facilitating access to patient data for industry, who we hope can provide the tools and extra information to make new conclusions from the data. When we spoke to patient’s about setting up the hubs they had concerns about whether they could trust industry with their data. How do they know that the new findings from their data will get fed back into the NHS?  It was important that a patient panel was involved in the hub formation process, and patient representatives are named on the application who will form part of the leadership team going forward.

A vital part of the success of the hubs is demonstrating how the partnership between the two sectors can provide valuable developments that can be fed back into the NHS, and ultimately benefit patients through better treatments or management of chronic conditions.