BREATHE - The Health Data Research Hub for Respiratory Health

Lead Research Organisation: University of Edinburgh

Abstract

What is the problem?
Everyone in the UK will have a respiratory illness at some point in their life. We have the best datasets in the world – which should be used to improve respiratory health – but these are currently very difficult to find, access and use.
What do we want to do?
People in the UK deserve the best respiratory health. We want to make respiratory health better by changing the way the NHS, pharmaceutical companies, charities and researchers use data.
How will we do it?
We will create a Hub (called BREATHE) where trained, approved experts can access respiratory data to benefit patients and the public. We will make it easier for experts to use data in safe and secure ways.
How will this benefit patients?
BREATHE will support high quality research and cutting-edge innovation that will improve the lives of people living with respiratory conditions in the UK. It is important that patients and the public are involved with this project throughout, including from the very start. This is why there are patient and public members living with respiratory conditions who have worked with us on developing this proposal and who are committed to delivering BREATHE’s goals."

Technical Summary

Approximately 12.7 million people report a history of long-standing respiratory illness and respiratory disorders are the third leading cause of death. Lung diseases account for 10% of all inpatient bed-days, cost the NHS £11billion/year and society over £70billion/year. Despite having the richest respiratory datasets in the world, data are fragmented, inconsistently structured and cumbersome to access, severely limiting their utility.
Our vision is to transform the UK’s respiratory health through creating Findable, Accessible, Interoperable and Reusable (FAIR) respiratory rich datasets; providing expert support to catalyse their responsible use in respiratory research and innovation. We will position the UK at the forefront of data driven innovation; creating a ‘one-stop’ service for trustworthy, multi-stakeholder utilisation of curated respiratory data for public, private and third sector benefit. Our UK-wide consortium provides the necessary expertise. Our priorities have been co-developed with patients, the public, industry and med-tech partners; together we have identified
major opportunities for early, high-profile, case studies.
BREATHE will initially focus on asthma and COPD, including respiratory infections, addressing three main themes of crucial importance to the UK life sciences sector:
1) Drug discovery and pharmacogenetics;
2) RWE to improve healthcare systems;
3) Digitally enabled trials
New data assets will be made available to the UK Health Data Research (HDR) Alliance and through the HDR Research Innovation Gateway. We will create a UK Respiratory Data Library (with metadata catalogue), curate and link data, and provide open-source algorithms to support secure analyses thereby enhancing the interoperability of datasets. This expandable platform will for example, enable the incorporation of data from wearable sensors into NHS apps to transform respiratory health, supporting rapid evaluation of new drugs and devices in real-world settings, and yielding evidence to underpin policy initiatives.
BREATHE will support stakeholders to securely use data to meet their diverse needs. We will work proactively with other Digital Innovation Hubs (DIH) to enhance the UK’s competitiveness.
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Publications

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Fry R (2021) Real-time spatial health surveillance: Mapping the UK COVID-19 epidemic. in International journal of medical informatics

 
Description All-Party Parliamentary Group for Respiratory Health - Improving Asthma Outcomes Consultation. Asthma UK Centre for Applied Research Response
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
URL https://www.ed.ac.uk/usher/breathe/latest/appg-respiratory-health-asthma-report
 
Description Member of DHSC/UKRI COVID-19 College of Experts
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Aziz Sheikh is a member of the DHSC/UKRI COVID-19 College of Experts. The EAVE-II activities, as well as studies using this resource such as DaCVaP, QCOVID and National Core Studies, have ensured that data for the whole Scottish population are included in the UK Government's COVID-19 disease and vaccination forecasting efforts, and supported identification of individuals at particularly high risk of serious COVID-19 outcomes.
 
Description Member of Scottish Government's Silver Group for Data & Intelligence and Chair of Task Force: 3 Priority Questions
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Membership of a guideline committee
Impact Professor Aziz Sheikh is a Member of Scottish Government's Silver Group for Data & Intelligence and Chair of Task Force: 3 Priority Questions. The EAVE II research has improved the Scottish Government's COVID-19 forecasting capability and supported identification of individuals at particularly high risk of serious COVID-19 outcomes.
 
Description Member of the Academy of Medical Science's Winter Scenarios Group
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Aziz Sheikh is a member of the Academy of Medical Science's Winter Scenarios Group. This policy related work has resulted in use of the EAVE-II national data platform for COVID-19 surveillance and the UK's main risk prediction algorithms for identifying risk factors for serious COVID-19 outcomes.
URL https://acmedsci.ac.uk/more/news/prepare-now-for-a-winter-covid-19-peak-warns-academy-of-medical-sci...
 
Description Member of the Royal Society's Data Evaluation and Learning for Viral Epidemics (DELVE) Group
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Aziz Sheikh is a member of the Royal Society's Data Evaluation and Learning for Viral Epidemics (DELVE) Group. This policy related work has amongst other things resulted in the use of the EAVE-II national data platform for COVID-19 surveillance and the UK's main risk prediction algorithms for identifying risk factors for serious COVID-19 outcomes.
URL https://rs-delve.github.io/
 
Description Member of the Scottish Government's Chief Medical Officer's COVID-19 Advisory Group, and its Data Task Force and Ethnicity Groups
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
Impact Professor Aziz Sheikh is a member of the Scottish Government's Chief Medical Officer's COVID-19 Advisory Group, and its Data Task Force and Ethnicity Groups, and also serves on the New and Emerging Respiratory Virus Threats (NERVTAG) Risk Stratification Subgroup. This policy-related work has benefited from creation of the EAVE-II national data platform for COVID-19 surveillance, and linkage to other health and research datasets, enabling the UK's main risk prediction algorithms for identifying risk factors for serious COVID-19 outcomes.
 
Description BREATHE: The Health Data Research Hub for Respiratory Health
Amount £4,670,992 (GBP)
Funding ID MC_PC_19004 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 10/2019 
End 08/2022
 
Description Data and Connectivity: Vaccine Pharmacovigilance
Amount £203,919 (GBP)
Funding ID HDRUK2020.146 
Organisation Health Data Research UK 
Sector Private
Country United Kingdom
Start 01/2021 
End 06/2021
 
Description Developing and validating a risk prediction model for long COVID-19
Amount £189,659 (GBP)
Organisation Chief Scientist Office 
Sector Public
Country United Kingdom
Start 03/2021 
End 02/2023
 
Description National Core Studies - Longitudinal Health & Wealth
Amount £9,862,000 (GBP)
Funding ID MC_PC_20030 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 10/2020 
End 03/2021
 
Description Post-hospitalisation COVID-19 study (PHOSP-COVID): a national consortium to understand and improve long-term health outcomes
Amount £8,532,683 (GBP)
Organisation Department of Health (DH) 
Sector Public
Country United Kingdom
Start 07/2020 
End 01/2022
 
Description QCOVID Covid Risk Stratification Tool. Development and evaluation of a tool for predicting risk of short-term adverse outcomes due to COVID-19 in the general UK population
Amount £1,285,333 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 05/2020 
End 05/2022
 
Title HDRUK Innovation Gateway - BREATHE Collection Page 
Description Health Data Research UK is enabling researchers to discover and request access to data via the Innovation Gateway. The Gateway does not hold or store any datasets or patient or health data but allows users to see descriptions of the different types of datasets in the UK to enable researchers to see what's available and how they can access it. A dataset is a collection of related individual pieces of data but in the case of health data, identifiable information (e.g. name or NHS number) is removed and data is de-identified where possible.If a researcher wants to access a dataset, they can send a request via the Innovation Gateway and this will be considered by the organisation that looks after that dataset. The HDRUK Innovation Gateway has created a 'collections page' for each of the 7 Hubs. BREATHE's collection page is a tool to showcase the data the Hub has access to, plus allows the Hub to make the datasets visable and facilitates a process to request access more simply. 
Type Of Material Database/Collection of data 
Year Produced 2020 
Provided To Others? No  
Impact The BREATHE collections page will allow anyone to see what data assets are collected by BREATHE and makes them easy to find, access and use. At the time of submission, BREATHE signposts to ~90 respiratory datasets. 
URL https://web.www.healthdatagateway.org/collection/420201816349588
 
Description Asthma UK British Lung Foundation 
Organisation Asthma UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution BREATHE is able to support the Asthma UK and British Lung Foundation Partnership to understand data needs for the charity to support the questions they wish to address, in some cases to inform policy making decisions.
Collaborator Contribution Asthma UK and British Lung Foundation Partnership are a powerful voice for all respiratory diseases in the UK and BREATHE has been able to tap into the expertise within this group in an advisory capacity.
Impact Ongoing collaboration, no formal impact to report yet.
Start Year 2019
 
Description Cystic Fibrosis Trust 
Organisation Cystic Fibrosis Trust
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The partnership will aim to raise awareness of the UK CF Registry amongst new audiences, improving access and stimulating research. The Hub has contributed financially to allow the data linkage.
Collaborator Contribution The Cystic Fibrosis Trust (CFT) is working with BREATHE to link data from its national UK Cystic Fibrosis (UK CF) registry to NHS patient records. The aim of the collaboration is to establish a UK-wide linked data asset for the UK CF registry and to support the community of patients living with cystic fibrosis by stimulating research and innovation in this somewhat neglected disease area. BREATHE is working with CFT to engage patients whose data are collected as part of this registry and involve them in the future scientific direction of our collaboration.
Impact Ongoing collaboration.
Start Year 2020
 
Description Diveplane Corp. 
Organisation Diveplane Corporation
Country United States 
Sector Private 
PI Contribution Access to secure Trusted Research Environment through partnership with SAIL Databank.
Collaborator Contribution A synthetic data engine will utilise respiratory data to enable the creation of accurate specific respiratory synthetic data sets. Diveplane have become a Supporting Partner to BREATHE. Diveplane will deploy the GEMINAI synthetic data engine using BREATHE respiratory data, in partnership with SAIL, to enable the creation of accurate specific respiratory synthetic data sets, without risk of exposing any confidential data.
Impact Ongoing collaboration.
Start Year 2021
 
Description GE Healthcare 
Organisation GE Healthcare Life Sciences
Country United Kingdom 
Sector Private 
PI Contribution BREATHE is offering GE Healthcare Partners the opportunity to provide expertise in the delivery of respiratory health services, and identify opportunities where GE Healthcare Partners can service the scale-up and delivery of those services. For example through BREATHE's support in their Accelerator Programme.
Collaborator Contribution GE Healthcare Partners are significantly involved in the delivery of healthcare services in the NHS and globally. Their expertise is supporting the scale-up of Hub services to ensure its sustainability.
Impact No impact to report yet, collaboration ongoing.
Start Year 2019
 
Description Novartis 
Organisation Novartis
Country Global 
Sector Private 
PI Contribution Novartis is involved with two HDR Hubs which, along with other UK investments (e.g. new headquarters in White City and partnership Oxford's Big Data Institute), is indicative of their commitment to the UK Life Sciences sector. Novartis can contribute to the development of UK respiratory capabilities and gain insight in the UK offering amongst UK and Global colleagues.
Collaborator Contribution Novartis bring pharmaceutical industry expertise and perspective to the activities of the Hub, one of their representatives sits as co-chair on the BREATHE Industry Forum. Novartis can provide use case projects that highlights the benefit of the Health Data Research Hub projects and are supporting the development of the sustainability model of the Hub through identifying Hub activities that resonate with industry.
Impact Ongoing collaboration.
Start Year 2019
 
Description Oxford Royal College of General Practitioners Research and Surveillance Centre 
Organisation Royal College of General Practitioners
Department RCGP Research and Surveillance Centre
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution As a partner, the Oxford-RCGP RSC will work collaboratively with BREATHE and across the Hub network to drive the use of health data in respiratory research and innovation
Collaborator Contribution The Oxford-RCGP RSC is an internationally renowned source of information, analysis and interpretation of primary care data. Established in 1957, the RSC collects and monitors data from over 1700 general practices across England and Wales. Through its weekly upload of pseudonymised data, it is the principal primary care surveillance system across England.
Impact Collaboration ongoing
Start Year 2020
 
Description Respiri 
Organisation Respiri Limited
Country Australia 
Sector Private 
PI Contribution Respiri are an Australia-based company. Its involvement with the BREATHE Hub highlights its interest in raising its profile in the UK and potentially scaling the use of its products to support respiratory health.
Collaborator Contribution Respiri are providing an early test project utilising its smart tools to empower people with asthma and improve outcomes. Respiri are providing insight based on data already collected to support asthma management. A representative from Respiri sits on the BREATHE Industry Forum and contributes to the Hub viability with industry.
Impact No formal impact to record yet, collaboration ongoing.
Start Year 2019
 
Description SAIL Databank 
Organisation SAIL Databank
Country United Kingdom 
Sector Public 
PI Contribution BREATHE facilitates the depositing of data into the SAIL Databank to be stored in a safe trusted environment. The BREATHE Hub will encourage partners, collaborations and customers to make use of the data solutions within BREATHE and will drive the use of the respiratory data assets held.
Collaborator Contribution SAIL Databank provides a technology platform to store the data, link datasets together and allow users secure access to different views of the data. This is administered by the SAIL Databank / Secure Research Platform (SeRP) teams at Swansea University. They provide an information governance and data security model which sets out the rules under which data within the platform is held and made available to researchers. The established SAIL Databank independent Information Governance Review Panel reviews all applications to use data. They contribute their well established contractual / operational model which governs the day to day administration of the platform. And finally, data linkage services for health records for linked data projects. SAIL Databank's relationship with NHS bodies who regularly share data for research across the UK means that studies interested in accessing anonymised NHS data for research, or linking their own data to such records, can do so with the support of SAIL
Impact See publications section for full list.
Start Year 2019
 
Description Savana Med 
Organisation Savana
Department Savana, UK
Country United Kingdom 
Sector Private 
PI Contribution Clinical expertise and advice, access to secure research environment through partnered TRE SAIL Databank. Mechanism to validate algorithm. Access to data.
Collaborator Contribution Savana team expertise and time invested in BREATHE meetings, events and collaborative opportunities. Training of the COVID algorithms by applying NLP (natural language processing) and Machine learning to anonymised electronic health records (EHR's) from participating UK sites. Collaboration involves support for Covid-19 clinical trial. The project will engage with 20 or more NHS sites to develop a new way of accessing and 'reading' patient data. The commercial partner is contributing cash to cover each site on boarding and data management costs. The subsequent database generated by the work will become a sharable BREATHE resource.
Impact Ongoing collaboration.
Start Year 2020
 
Description Tiny Medical Apps 
Organisation Tiny Medical Apps
Country United Kingdom 
Sector Private 
PI Contribution BREATHE has supported Tiny Medical Apps to secure funding from Innovate UK's Sustainable Innovation Fund to develop a fast, developer-friendly, secure, consent-driven, and cost-effective digital platform that aims to facilitate access to patient records across England.
Collaborator Contribution Tiny Medical Apps are providing support via the BREATHE industry forum and may provide consented patient reported data, in the future, for use in research.
Impact Funding secured for TinyMedical Apps from Innovate UK's Sustainable Innovation Fund to develop a fast, developer-friendly, secure, consent-driven, and cost-effective digital platform that aims to facilitate access to patient records across England.
Start Year 2019