BREATHE - The Health Data Research Hub for Respiratory Health
Lead Research Organisation:
University of Edinburgh
Department Name: UNLISTED
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."
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.
"
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.
"
Organisations
- University of Edinburgh (Lead Research Organisation)
- Federal University of the Recôncavo of Bahia (Collaboration)
- OFFICE FOR NATIONAL STATISTICS (Collaboration)
- GE Healthcare Life Sciences (Collaboration)
- Medicines and Healthcare Regulatory Agency (Collaboration)
- UNIVERSITY OF STRATHCLYDE (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- Savana (Collaboration)
- CYSTIC FIBROSIS TRUST (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- Asthma + Lung UK (Collaboration)
- GlaxoSmithKline (GSK) (Collaboration)
- Smart Respiratory Products Ltd (Collaboration)
- Health Data Research UK (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- Novartis (Collaboration)
- Public Health Scotland (Collaboration)
- Respiri Limited (Collaboration)
- Tiny Medical Apps (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Meteorological Office UK (Collaboration)
- SAIL Databank (Collaboration)
- Diveplane Corporation (Collaboration)
- Precisionlife (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- Royal College of General Practitioners (Collaboration)
Publications
Adeloye D
(2022)
Global, regional, and national prevalence of, and risk factors for, chronic obstructive pulmonary disease (COPD) in 2019: a systematic review and modelling analysis.
in The Lancet. Respiratory medicine
Adeloye D
(2021)
The long-term sequelae of COVID-19: an international consensus on research priorities for patients with pre-existing and new-onset airways disease.
in The Lancet. Respiratory medicine
Adeloye D
(2021)
Research priorities to address the global burden of chronic obstructive pulmonary disease (COPD) in the next decade.
in Journal of global health
Agrawal U
(2021)
COVID-19 hospital admissions and deaths after BNT162b2 and ChAdOx1 nCoV-19 vaccinations in 2·57 million people in Scotland (EAVE II): a prospective cohort study.
in The Lancet. Respiratory medicine
Agrawal U
(2022)
Association between multimorbidity and mortality in a cohort of patients admitted to hospital with COVID-19 in Scotland.
in Journal of the Royal Society of Medicine
Aldridge SJ
(2024)
Uptake of COVID-19 vaccinations amongst 3,433,483 children and young people: meta-analysis of UK prospective cohorts.
in Nature communications
Allen RJ
(2023)
Longitudinal lung function and gas transfer in individuals with idiopathic pulmonary fibrosis: a genome-wide association study.
in The Lancet. Respiratory medicine
Allsopp RC
(2022)
A rapid RT-LAMP SARS-CoV-2 screening assay for collapsing asymptomatic COVID-19 transmission.
in PloS one
| Title | Additional file 1 of Derivation of asthma severity from electronic prescription records using British thoracic society treatment steps |
| Description | Supplementary Material 1 |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| URL | https://springernature.figshare.com/articles/figure/Additional_file_1_of_Derivation_of_asthma_severi... |
| Title | Additional file 1 of Derivation of asthma severity from electronic prescription records using British thoracic society treatment steps |
| Description | Supplementary Material 1 |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| URL | https://springernature.figshare.com/articles/figure/Additional_file_1_of_Derivation_of_asthma_severi... |
| 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 | Contribution to a national consultation/review |
| URL | https://www.ed.ac.uk/usher/breathe/latest/appg-respiratory-health-asthma-report |
| Description | CMO meeting: update on EAVE II and future plans |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | COALESCE Advisory Board meeting |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | Keen to hear outcome of current studies which analyse healthcare data at scale, from the point of view of (a) the findings and how they will guide public health policy; (b) the opportunities to improve healthcare data linkage; and (c) opportunities to link healthcare data with other non health sources (e.g. social, economic, air quality) to add to the questions we can answer and ultimate policy impact. |
| Description | Contribution to Medical Schools Council |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Contribution to Scottish Government reports on modelling of the pandemic |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Citation in other policy documents |
| Impact | This is evidence of EAVE II findings being used directly by the Director-General Health and Social Care in Scotland, in terms of spread of the disease and demands on the system e.g. in terms of healthcare |
| URL | https://www.ed.ac.uk/usher/eave-ii/key-outputs/scottish-government-reports |
| Description | Future of EAVE II and infrastructure for near real-time healthcare data access for research in Scotland |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | The Chief Scientist Office has continued to lead high level discussions with Scottish Government and NHS colleagues about the major benefits of using near real-time healthcare data in research beyond the acute phase of the COVID-19 pandemic. These discussions have continued and are being prioritised despite a change in the Chief Scientist for Health during this period. The Chief Scientist Office agrees that there is a key need for ongoing health surveillance permissions and infrastructure in Scotland, to support policymaking around areas such as other infectious diseases, other health hazards, antimicrobial resistance and non-communicable diseases of major health burden, as well as to provide ongoing whole system intelligence on the Scottish health and care system. |
| Description | GO-Science webinar: COALESCE |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | Policymakers are aware of the potential of EHRs in underpinning decisionmaking. HDR UK is seeking to build strategically on the COALESCE study with further capacity building and case studies. |
| Description | Global Initiative for Asthma (GINA) - Scientific Committee |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Contributions to messaging for GINA 2024 report, clinical advice for diagnosis of asthma, management of exacerbations in primary care, ongoing discussions around changes in management of asthma in children 6-12 years and allergen immunotherapy. |
| 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 guidance/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 | Scottish Government Public Health Advisory Forum |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Update on COVID-19 risk groups to JCVI and CMOs |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | Our contributions to COVID-19 public health surveillance measures across Scotland/the UK have identified those at highest risk of serious COVID-19 outcomes. This work contributes directly to government guidelines and laws to protect health, public information about COVID-19, and vaccination strategies. |
| Description | Applying a multidisciplinary approach to defining molecular pathways in lung function impairment |
| Amount | £8,748,933 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2022 |
| End | 10/2030 |
| Description | BREATHE - The Health Data Research Hub for Respiratory Health |
| Amount | £80,000 (GBP) |
| Funding ID | MC_PC_21054 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2021 |
| End | 03/2022 |
| Description | BREATHE - The Health Data Research Hub for Respiratory Health Capital Award |
| Amount | £400,000 (GBP) |
| Funding ID | MC_PC_22006 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 07/2022 |
| End | 03/2023 |
| Description | COVID-19 Data Science Research Funding Call |
| Amount | £230,000 (GBP) |
| Funding ID | 2021.0156 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2021 |
| End | 09/2022 |
| Description | Core Funding National Programme Award |
| Amount | £5,038,262 (GBP) |
| Funding ID | HDRUK2023.0027 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2023 |
| End | 03/2028 |
| Description | Data and Connectivity: Vaccine Pharmacovigilance |
| Amount | £203,919 (GBP) |
| Funding ID | HDRUK2020.146 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| 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 | Director's Discretionary Fund - COALESCE |
| Amount | £233,194 (GBP) |
| Funding ID | TF2022.18 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2022 |
| End | 03/2023 |
| Description | EAVE II additional funding |
| Amount | £72,327 (GBP) |
| Organisation | Public Health Scotland |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2020 |
| End | 09/2021 |
| Description | EAVE II continuation |
| Amount | £497,577 (GBP) |
| Organisation | Public Health Scotland |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2021 |
| End | 09/2022 |
| Description | Efficient, scalable phenome-wide association studies in drug development |
| Amount | £769,246 (GBP) |
| Organisation | Orion Corporation |
| Department | ORION Pharma |
| Sector | Private |
| Country | United Kingdom |
| Start | 03/2022 |
| End | 03/2024 |
| Description | Enhancing public health readiness and response |
| Amount | £35,000 (GBP) |
| Organisation | UK Health Security Agency |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2024 |
| End | 06/2024 |
| Description | NIHR-funded rapid funding call for "Data Science to inform NHS compound winter pressure policy response" |
| Amount | £61,412 (GBP) |
| Funding ID | HRUK2022.0323 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 03/2023 |
| 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 | 09/2020 |
| End | 03/2021 |
| Description | Phase 1 COVID-19 Immunity - National Core Study (Phase 1 IMM-NCS) |
| Amount | £465,114 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2021 |
| End | 03/2023 |
| Description | Phase 1 COVID-19 Longitudinal Health and Wellbeing - National Core Study |
| Amount | £9,000,000 (GBP) |
| Funding ID | MC_PC_20059 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2021 |
| End | 09/2022 |
| 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 | 06/2020 |
| 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 | 04/2020 |
| End | 05/2022 |
| Description | Rapid Outcomes of COVid therapeutics in Eave II (ROCOVE) |
| Amount | £113,580 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2022 |
| End | 03/2022 |
| Description | Respiratory Data Science Catalyst |
| Amount | £500,000 (GBP) |
| Organisation | Asthma + Lung UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2023 |
| End | 03/2028 |
| Description | SME Access to Healthcare Data: AI Generated Synthetic Data |
| Amount | £30,000 (GBP) |
| Organisation | Innovate UK |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2022 |
| End | 05/2022 |
| Description | Severe COVID-19 treated with Sotrovimab |
| Amount | £198,000 (GBP) |
| Organisation | GlaxoSmithKline (GSK) |
| Sector | Private |
| Country | Global |
| Start | 04/2022 |
| End | 02/2023 |
| Description | SyntheticData Guidance |
| Amount | £80,000 (GBP) |
| Funding ID | 4050856767 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2022 |
| End | 03/2023 |
| Description | UK Longitudinal Linkage Collaboration for COVID-19 research (EXCEED Study) |
| Amount | £143,691 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2020 |
| End | 05/2023 |
| Description | What is the uptake, safety and effectiveness of COVID-19 vaccines in: a. pregnancy; b. children and young people; c. those receiving booster doses; d. those co-administered COVID-19 and influenza vaccines? |
| Amount | £249,775 (GBP) |
| Funding ID | 2021.0158 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2021 |
| End | 09/2022 |
| Title | Creation of respiratory registries in England, Wales, Scotland and Northern Ireland |
| Description | Curation of code and cohort profiles for COPD, ILD and asthma in primary and linked secondary care data in England (CPRD), Wales (SAIL), Scotland (DataLoch) and Northern Ireland (Honest Broker Service; not ILD yet). Specific details to be added to the Research Datasets impact tab when publication is complete. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Algorithms and code are reproducible as a research-ready resource and an improvement in data for industry, charity, academic and NHS use. This will enable a wider range of researchers to access data and code in a way that saves time/resource and ensures consistency in analyses and reporting. Initial use has been to describe the changing epidemiology of asthma, COPD and ILD between 2004 and 2023. Use of EHRs improves understanding of the evolving impacts of these disease on individuals, and the associated burden in the UK nations. |
| Title | How to create SNOMED CT codelists for primary care EHRs |
| Description | An entry in github breaks down the creation of SNOMED CT codelists into 9 steps. Example STATA, R and Python code is given for a smoking codelist for CPRD Aurum (but can be applied to any database using SNOMED CT codes). |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Publication in press. Impact will follow. |
| URL | https://github.com/NHLI-Respiratory-Epi/SNOMED-CT-codelists |
| Title | How to create drug codelists for recorded prescriptions |
| Description | An entry in github adapts the creation of SNOMED CT codelists, with considerations specific to generating codelists for drugs or medical devices, instead of for symptoms and conditions. The 9 steps are clearly described in a flow chart. Example STATA code is given. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Publication in press. Impact will follow. |
| URL | https://github.com/NHLI-Respiratory-Epi/drug-codelist-creation |
| Title | How to find acute exacerbation of COPD events in UK primary care EHRs |
| Description | An entry in github explains how an AECOPD can be found in primary care EHRs. Example STATA code is given. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Publication in press. Impact to follow. |
| URL | https://github.com/NHLI-Respiratory-Epi/AECOPD |
| Title | Sharing code on github |
| Description | We regularly update code (https://github.com/EAVE-II). Health data for our research is stored securely but separately in Trusted Research Environments in England, Scotland, Wales and Northern Ireland. By pooling the number of cases across different parts of the UK, we can create a big enough dataset to analyse rare events. Shared code facilitates common data analysis protocols across different Trusted Research Environments which means that we can perform analyses using much larger samples but without sharing actual data between research teams. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Our recent paper PLOS Medicine paper (doi.org/10.1371/journal.pmed.1003927) "First dose ChAdOx1 and BNT162b2 COVID-19 vaccinations and cerebral venous sinus thrombosis" is an example of impact from this method. There were not enough people in Scotland who had experienced CVST after a first dose of vaccine for us to analyse the data in a reliable way for this condition. By pooling the data across Scotland, England and Wales to form a sample of £11.6m people, we could create a big enough dataset to analyse possible links with vaccination, without sharing individual data between countries. We were able to show that there is a very small increased risk of CVST for people who had a first dose of the Oxford-AstraZeneca vaccine. We did not find any link between CVST and the Pfizer-BioNTech vaccine. |
| URL | https://github.com/EAVE-II |
| Title | Sharing respiratory disease code on github |
| Description | By sharing and harmonising methodology for curating research-ready (and non-project-specific) datasets for these diseases across different electronic health record (EHR) databases in the UK, and generating consistent phenotype and variable definitions regardless of coding system, we aim to speed up research into respiratory diseases: Asthma, Interstitial Lung Disease (ILD) and Chronic Obstructive Pulmonary Disease (COPD). The EHR databases utilised in this project were the Clinical Practice Research Datalink (CPRD) Aurum for England; Secure Anonymised Information Linkage (SAIL) Databank for Wales; and DataLoch for South-East Scotland. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Publication is in press. Impacts will be reported in due course. |
| URL | https://github.com/NHLI-Respiratory-Epi/Curation-Harmonisation |
| Title | DataLoch Respiratory Registry |
| Description | This registry brings together data about South-East Scotland residents with acute and chronic respiratory conditions, specifically COPD (Chronic Obstructive Pulmonary Disease), asthma and ILD (Interstitial Lung Disease). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Proposals for use of these data are under review through the DataLoch application process. |
| URL | https://dataloch.org/data/about-the-data |
| 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 |
| Title | Synthetic asthma dataset |
| Description | We attempted to create a synthetic dataset from the Welsh Asthma Observatory (WAO) data using the Diveplane GEMINAI tool. Unfortunately the tool was difficult to use and it took months of engineering to get a synthetic version of the WAO. However, this is too close to the real data to be useful. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | Unfortunately the data created are too close to the real data and are not really fit for purpose in terms of mass training, lowering governance etc. We learned a huge amount from the process in terms of permissions, replication of data with integrity / fidelity (statistical characteristics) without a backward path to the real data, but the world of data and AI moved so quickly during this period that you can now do a 260m row dataset in 15 min, and outcomes would be better than we achieved in this project. |
| Title | Work with Public Health Scotland to make data available to other researchers |
| Description | eDRIS has developed a COVID-19 Research Database as a direct output from the EAVE II study. This is a reduced set of key datasets and fields to support urgent COVID Research. |
| Type Of Material | Data handling & control |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This makes some of the EAVE II data available to a wider group of researchers, in line with Public Benefit and Privacy Panel (PBPP) approvals. |
| URL | https://www.isdscotland.org/Products-and-Services/eDRIS/COVID-19/index.asp |
| Description | A+LUK |
| Organisation | Asthma + Lung UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Discussions in 2022: information about the potential use of EHRs and the potential of wider data linkage to address key policy questions around incidence, prevalence and health economics of respiratory diseases. |
| Collaborator Contribution | Partnership agreed in 2023 with HDR UK. Includes £500,000 in funding for a data science catalyst in respiratory medicine |
| Impact | HDR UK is seeking to second an Associate Director to take on leadership of a new data science catalyst in respiratory medicine. |
| Start Year | 2022 |
| Description | Asthma UK British Lung Foundation |
| Organisation | Asthma + Lung 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 | BHF Data Science Centre |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Prof Jenni Quint led discussions with the British Heart Foundation Data Science Centre (BHF DSC) to utilise their data infrastructure to answer questions about comorbidities between CVD and lung disease. |
| Collaborator Contribution | The HDR UK BHF DSC team provided support to the BREATHE analysts to explore opportunities and address data queries. |
| Impact | Findings contributed to our understanding of complications following COVID-19 in people with lung disease. |
| Start Year | 2022 |
| Description | Brazil COVID-19 collaboration |
| Organisation | Federal University of the Recôncavo of Bahia |
| Country | Brazil |
| Sector | Academic/University |
| PI Contribution | Analysis of Brazil COVID-19 variant data, vaccination data and occurence of symptomatic SARS-CoV-infection; comparison with Scotland |
| Collaborator Contribution | Provision of data and analysis |
| Impact | Contribution to public health policy in Brazil and research publications: doi: 10.1016/S1473-3099(22)00451-0 doi: 10.1016/S0140-6736(21)02754-9 |
| Start Year | 2021 |
| Description | COVID-19 in pregnancy in Scotland |
| Organisation | University of Edinburgh |
| Department | MRC Centre for Reproductive Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Explore list of variables to extract from the NI, Scotland and Wales centres. Creating an analysis plan for pooled results. |
| Collaborator Contribution | Share COPS methodology with the team and work with them to identify relevant variables in TREs. |
| Impact | Analysis plan is in progress. |
| Start Year | 2022 |
| Description | CPRD & SAIL Databank |
| Organisation | Medicines and Healthcare Regulatory Agency |
| Department | Clinical Practice Research Datalink (CPRD) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Curation of code for asthma, COPD and ILD in primary and linked secondary care data in England and Wales. |
| Collaborator Contribution | Provision of anonymised patient data and governance oversight / management. |
| Impact | Project commissioned in 2022. COPD and ILD algorithms and code are to be made available as a research-ready resource and an improvement in data for industry, charity, academic and NHS use. Current status: the work is complete and a publication is in press (Feb 2024). Methods have been added to github and are listed in ResearchFish reports. This work has provides foundations for the HDR UK Inflammation and Immunity Driver Programme and work is continuing from this. |
| Start Year | 2021 |
| Description | Can we enable harmonised, real-time, pharmacovigilance of COVID-19 vaccine(s) using routinely collected linked national data across the UK? |
| Organisation | Queen's University Belfast |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We led this partnership to access routine healthcare data and use common protocols to understand how safe COVID-19 vaccines are and how well they work across the UK |
| Collaborator Contribution | Our partners looked for patterns in health records for the populations of England, Northern Ireland and Wales relating to COVID-19 vaccines, and we worked together to develop common data analysis protocols. |
| Impact | We were the first group in the world to show using national routinely collected health data that having a first vaccine dose gives very good protection against COVID-19 hospital admission. Between 8 December 2020 and 15 February 2021, we studied over 1.3 million vaccinated people in Scotland. In a follow-on analysis, we found that between 8 December 2020 and 14 April 2021, less than one in 2000 vaccinated people in Scotland had severe COVID-19. This is despite high background levels of infection. Using common analysis protocols, we were able to coordinate a UK-wide analysis with our partners to understand how long vaccine protection lasts. At the request of one of the UK's Chief Scientific Advisers, we used data to look at side effects in the blood from the first dose of a COVID-19 vaccines. We did not find any link between the Pfizer-BioNTech vaccine and bleeding or blood-clotting side effects. We did find in some people given the Oxford-AstraZeneca vaccine a slightly increased risk of a condition known as 'idiopathic thrombocytopenic purpura' (ITP) which increases the risk of bleeding disorders. In our Scottish analysis, we were not able to find a link between the COVID-19 vaccines and a very rare side effect in the brain called 'cerebral venous sinus thrombosis' (CVST). This may have been because the number we studied in Scotland was too small to find such a rare event. To address this, we repeated the analysis in England and Wales and brought results together with the Scottish data into a single analysis of 11.6 million people. We found a slightly increased risk of CVST (0.25 extra cases of clots per million people) in the 28 days after a first dose of the Oxford-AstraZeneca vaccine. This is very, very low compared with the risk of COVID-19 hospitalisation and death in people who have not been vaccinated. We did not find any link between CVST and the Pfizer-BioNTech vaccine. In Northern Ireland, our partners looked at vaccine uptake in people having treatment for mental health disorders. When looking at their healthcare records, it seemed that adults taking medication to aid sleep, anxiety or psychosis were less likely to be vaccinated than the general adult population. We also looked at whether healthcare staff in Wales had been vaccinated. We found that overall, a high number of staff did have their vaccines but the numbers vaccinated depended on their age and what jobs they did. We have shown that vaccines prevent or shorten COVID-19 outbreaks in care home residents in Northern Ireland. We are looking at how well and for how long vaccines protect healthcare professionals in Wales, and are currently coordinating a UK-wide analysis to understand how long vaccine protection lasts. |
| Start Year | 2021 |
| Description | Can we enable harmonised, real-time, pharmacovigilance of COVID-19 vaccine(s) using routinely collected linked national data across the UK? |
| Organisation | Swansea University |
| Department | Swansea University Medical School |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We led this partnership to access routine healthcare data and use common protocols to understand how safe COVID-19 vaccines are and how well they work across the UK |
| Collaborator Contribution | Our partners looked for patterns in health records for the populations of England, Northern Ireland and Wales relating to COVID-19 vaccines, and we worked together to develop common data analysis protocols. |
| Impact | We were the first group in the world to show using national routinely collected health data that having a first vaccine dose gives very good protection against COVID-19 hospital admission. Between 8 December 2020 and 15 February 2021, we studied over 1.3 million vaccinated people in Scotland. In a follow-on analysis, we found that between 8 December 2020 and 14 April 2021, less than one in 2000 vaccinated people in Scotland had severe COVID-19. This is despite high background levels of infection. Using common analysis protocols, we were able to coordinate a UK-wide analysis with our partners to understand how long vaccine protection lasts. At the request of one of the UK's Chief Scientific Advisers, we used data to look at side effects in the blood from the first dose of a COVID-19 vaccines. We did not find any link between the Pfizer-BioNTech vaccine and bleeding or blood-clotting side effects. We did find in some people given the Oxford-AstraZeneca vaccine a slightly increased risk of a condition known as 'idiopathic thrombocytopenic purpura' (ITP) which increases the risk of bleeding disorders. In our Scottish analysis, we were not able to find a link between the COVID-19 vaccines and a very rare side effect in the brain called 'cerebral venous sinus thrombosis' (CVST). This may have been because the number we studied in Scotland was too small to find such a rare event. To address this, we repeated the analysis in England and Wales and brought results together with the Scottish data into a single analysis of 11.6 million people. We found a slightly increased risk of CVST (0.25 extra cases of clots per million people) in the 28 days after a first dose of the Oxford-AstraZeneca vaccine. This is very, very low compared with the risk of COVID-19 hospitalisation and death in people who have not been vaccinated. We did not find any link between CVST and the Pfizer-BioNTech vaccine. In Northern Ireland, our partners looked at vaccine uptake in people having treatment for mental health disorders. When looking at their healthcare records, it seemed that adults taking medication to aid sleep, anxiety or psychosis were less likely to be vaccinated than the general adult population. We also looked at whether healthcare staff in Wales had been vaccinated. We found that overall, a high number of staff did have their vaccines but the numbers vaccinated depended on their age and what jobs they did. We have shown that vaccines prevent or shorten COVID-19 outbreaks in care home residents in Northern Ireland. We are looking at how well and for how long vaccines protect healthcare professionals in Wales, and are currently coordinating a UK-wide analysis to understand how long vaccine protection lasts. |
| Start Year | 2021 |
| Description | Can we enable harmonised, real-time, pharmacovigilance of COVID-19 vaccine(s) using routinely collected linked national data across the UK? |
| Organisation | University of Oxford |
| Department | Nuffield Department of Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We led this partnership to access routine healthcare data and use common protocols to understand how safe COVID-19 vaccines are and how well they work across the UK |
| Collaborator Contribution | Our partners looked for patterns in health records for the populations of England, Northern Ireland and Wales relating to COVID-19 vaccines, and we worked together to develop common data analysis protocols. |
| Impact | We were the first group in the world to show using national routinely collected health data that having a first vaccine dose gives very good protection against COVID-19 hospital admission. Between 8 December 2020 and 15 February 2021, we studied over 1.3 million vaccinated people in Scotland. In a follow-on analysis, we found that between 8 December 2020 and 14 April 2021, less than one in 2000 vaccinated people in Scotland had severe COVID-19. This is despite high background levels of infection. Using common analysis protocols, we were able to coordinate a UK-wide analysis with our partners to understand how long vaccine protection lasts. At the request of one of the UK's Chief Scientific Advisers, we used data to look at side effects in the blood from the first dose of a COVID-19 vaccines. We did not find any link between the Pfizer-BioNTech vaccine and bleeding or blood-clotting side effects. We did find in some people given the Oxford-AstraZeneca vaccine a slightly increased risk of a condition known as 'idiopathic thrombocytopenic purpura' (ITP) which increases the risk of bleeding disorders. In our Scottish analysis, we were not able to find a link between the COVID-19 vaccines and a very rare side effect in the brain called 'cerebral venous sinus thrombosis' (CVST). This may have been because the number we studied in Scotland was too small to find such a rare event. To address this, we repeated the analysis in England and Wales and brought results together with the Scottish data into a single analysis of 11.6 million people. We found a slightly increased risk of CVST (0.25 extra cases of clots per million people) in the 28 days after a first dose of the Oxford-AstraZeneca vaccine. This is very, very low compared with the risk of COVID-19 hospitalisation and death in people who have not been vaccinated. We did not find any link between CVST and the Pfizer-BioNTech vaccine. In Northern Ireland, our partners looked at vaccine uptake in people having treatment for mental health disorders. When looking at their healthcare records, it seemed that adults taking medication to aid sleep, anxiety or psychosis were less likely to be vaccinated than the general adult population. We also looked at whether healthcare staff in Wales had been vaccinated. We found that overall, a high number of staff did have their vaccines but the numbers vaccinated depended on their age and what jobs they did. We have shown that vaccines prevent or shorten COVID-19 outbreaks in care home residents in Northern Ireland. We are looking at how well and for how long vaccines protect healthcare professionals in Wales, and are currently coordinating a UK-wide analysis to understand how long vaccine protection lasts. |
| Start Year | 2021 |
| Description | Collaboration with DataLoch |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | SAIL provided curation and technical support. Prof Jenni Quint provided guidance and clinical expertise on respiratory data curation. |
| Collaborator Contribution | DataLoch created a new respiratory registry with NHS Lothian data, with code lists and variable definitions aligned to other UK nations for interoperability. |
| Impact | With MRC Capital funding, DataLoch has (a) added deprivation data and date of death to demographics; (b) added COPD severity stage; (c) signed off metadata with clinical lead (JQ) for publication on DataLoch catalogue; (d) added the registry to the applicant selection form and process; (e) added metadata to the HDR UK gateway; and (f) created collateral to promote the registry (website, comms, acknowledgement text etc). Excellent progress enabled extension of the project to include asthma data. The DataLoch data are available as part of the DataLoch Respiratory Registry - a de-identified registry of linked respiratory data from the South-East Scotland region - which can be accessed by application to the DataLoch service. A publication is accepted in Clinical Epidemiology (Feb 2024). |
| Start Year | 2022 |
| Description | Collaboration with EXCEED |
| Organisation | University of Leicester |
| Department | Department of Epidemiology and Public Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Partnership with the SAIL Databank includes project set up, disclosure control output reviews, data loading and data checks, licenses, technical support, LINUZ and HPC costs. |
| Collaborator Contribution | Establish a project to develop and test capacity for TRE-based respiratory genomics data research, with a view to developing on initiatives like DARE-UK, PRUK, UKLLC and the HDR UK multi omics initiative. Contributions included enhancing the EXCEED study SAIL deposit with imported genomic data, alongside health linkages and lung function data; establishing a large-scale genomic research platform; testing and improving the SAIL respiratory genomic TRE with suitable research projects; adding new genomic, proteomic and metabololomics data; and expanding testing of the SAIL respiratory genomic TRE. |
| Impact | Capital funding from MRC led to setting up the SAIL Databank virtual machine with relevant statistical genetic software; preparing the respiratory genome-wide association study exemplars in EXCEED; generating the new genomic, proteomic, metabolomic and glycomic data; new data linkage; running respiratory statistical genetic analyses using the new data platform. |
| Start Year | 2022 |
| Description | Collaboration with Oxford |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' was funded from the NCSi grant and led by the Univeristy of Edinburgh. The project aimed to undertake a national prospective population-based cohort using routinely collected data across Scotland, with independent replication across the UK Nations' national surveillance datasets. Descriptive analysis was carried out to build a picture of which people have post-vaccine breakthroughs. These results were evaluated in terms of people's immune response after vaccination, using data from serology where available and analysis of how long this protection lasts. Following this, the risk of experiencing vaccine breakthrough for particular groups was calculated. Also, vaccine breakthroughs in terms of viral variant, vaccine type, and number of doses were evaluated. |
| Collaborator Contribution | Oxfird's resources accesses and analysed English data for the 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' project. |
| Impact | 1. 'Evaluation of Risk Factors for Postbooster Omicron COVID-19 Deaths in England'. JAMA Netw Open, 2022 Sep 1;5(9):e2233446. doi: 10.1001/jamanetworkopen.2022.33446 2. 'Severe COVID-19 outcomes after full vaccination of primary schedule and initial boosters: pooled analysis of national prospective cohort studies of 30 million individuals in England, Northern Ireland, Scotland, and Wales' Lancet, 2022 15-21 October; 400(10360): 1305-1320. Published online 2022 Oct 14. doi: 10.1016/S0140-6736(22)01656-7 |
| Start Year | 2021 |
| Description | Collaboration with PHS |
| Organisation | Public Health Scotland |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Project 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' was funded from the NCSi grant and led by the Univeristy of Edinburgh. The project aimed to undertake a national prospective population-based cohort using routinely collected data across Scotland, with independent replication across the UK Nations' national surveillance datasets. Descriptive analysis was carried out to build a picture of which people have post-vaccine breakthroughs. These results were evaluated in terms of people's immune response after vaccination, using data from serology where available and analysis of how long this protection lasts. Following this, the risk of experiencing vaccine breakthrough for particular groups was calculated. Also, vaccine breakthroughs in terms of viral variant, vaccine type, and number of doses were evaluated. |
| Collaborator Contribution | PHS's resourses provided public health input and served as a bridge to colleagues in PHS and PHE for the 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' project. |
| Impact | 1. 'Evaluation of Risk Factors for Postbooster Omicron COVID-19 Deaths in England'. JAMA Netw Open, 2022 Sep 1;5(9):e2233446. doi: 10.1001/jamanetworkopen.2022.33446 2. 'Severe COVID-19 outcomes after full vaccination of primary schedule and initial boosters: pooled analysis of national prospective cohort studies of 30 million individuals in England, Northern Ireland, Scotland, and Wales' Lancet, 2022 15-21 October; 400(10360): 1305-1320. Published online 2022 Oct 14. doi: 10.1016/S0140-6736(22)01656-7 |
| Start Year | 2021 |
| Description | Collaboration with QUB |
| Organisation | Queen's University Belfast |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' was funded from the NCSi grant and led by the University of Edinburgh. The project aimed to undertake a national prospective population-based cohort using routinely collected data across Scotland, with independent replication across the UK Nations' national surveillance datasets. Descriptive analysis was carried out to build a picture of which people have post-vaccine breakthroughs. These results were evaluated in terms of people's immune response after vaccination, using data from serology where available and analysis of how long this protection lasts. Following this, the risk of experiencing vaccine breakthrough for particular groups was calculated. Also, vaccine breakthroughs in terms of viral variant, vaccine type, and number of doses were evaluated. Dialogue with colleagues in NI and QUB led to greater understanding of the challenges of using GP data for research purposes, and led to further specific work in this area. |
| Collaborator Contribution | QUB's resources accessed and analysed Norther Ireland data for the 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' project. |
| Impact | 1. 'Evaluation of Risk Factors for Postbooster Omicron COVID-19 Deaths in England'. JAMA Netw Open, 2022 Sep 1;5(9):e2233446. doi: 10.1001/jamanetworkopen.2022.33446 2. 'Severe COVID-19 outcomes after full vaccination of primary schedule and initial boosters: pooled analysis of national prospective cohort studies of 30 million individuals in England, Northern Ireland, Scotland, and Wales' Lancet, 2022 15-21 October; 400(10360): 1305-1320. Published online 2022 Oct 14. doi: 10.1016/S0140-6736(22)01656-7 |
| Start Year | 2021 |
| Description | Collaboration with QUB & Honest Broker Service |
| Organisation | Queen's University Belfast |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Professor Jenni Quint has shared code lists and algorithms to ensure consistency across datasets. Chris Orton has supported with technical aspects from SAIL. |
| Collaborator Contribution | Dialogue with the General Practitioner Intelligence Platform (GPIP), facilitation of data linkage with the Honest Broker Service and further data processing to build a respiratory cohort and derive variables to be used for future projects. |
| Impact | Capital funding from MRC enabled the first use of GPIP to build a cohort of patients with airway disease that can be used for research. The data are linked through the Northern Ireland Honest Broker Service to several other healthcare datasets including medication dispensing, emergency department contacts, hospital admissions and laboratory data to provide a unique linked dataset within Northern Ireland. Cohort definitions are based on Quality and Outcomes Framework registers for asthma and COPD, with code lists and variable definitions aligned to other UK nations for interoperability. Several respiratory research projects are planned as part of the HDRUK Inflammation and Immunity Programme, and a framework for future linkage in other disease areas within Northern Ireland. |
| Start Year | 2022 |
| Description | Collaboration with SAIL |
| Organisation | SAIL Databank |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | DaC-VaP's research focus was pharmacovigilance, meaning the science and activities relating to the detection, assessment, understanding, and prevention of any side effects of a vaccine or drug. DaC-VaP looked at how safe COVID-19 vaccines are, how well they worked in the general population, and how many people took a vaccine when they were offered it (vaccine uptake). |
| Collaborator Contribution | SAIL provided the data platform for the DaC-VaP's analysis. |
| Impact | Investigating the association between COVID-19 vaccination and care home outbreak frequency and duration Risk of thrombocytopenic, haemorrhagic and thromboembolic disorders following first, second and booster doses of COVID-19 vaccination and testing positive for SARS-CoV-2: A self-controlled case series analysis in Wales |
| Start Year | 2021 |
| Description | Collaboration with SAIL Databank |
| Organisation | SAIL Databank |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Chris Orton supported extension of the relationship with the SAIL Databank, to support further novel data linkages and development of analytical capacity for several BREATHE capital projects. |
| Collaborator Contribution | Project set up, disclosure control output reviews, data loading and data checks, licenses, technical support, LINUX and HPC costs. |
| Impact | Capital funding from MRC led to setting up the SAIL Databank virtual machine with relevant statistical genetic software; preparing the respiratory genome-wide association study exemplars in EXCEED; generating the new genomic, proteomic, metabolomic and glycomic data; new data linkage; running respiratory statistical genetic analyses using the new data platform. |
| Start Year | 2022 |
| Description | Collaboration with Strathclyde |
| Organisation | University of Strathclyde |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' was funded from the NCSi grant and led by the University of Edinburgh. The project aimed to undertake a national prospective population-based cohort using routinely collected data across Scotland, with independent replication across the UK Nations' national surveillance datasets. Descriptive analysis was carried out to build a picture of which people have post-vaccine breakthroughs. These results were evaluated in terms of people's immune response after vaccination, using data from serology where available and analysis of how long this protection lasts. Following this, the risk of experiencing vaccine breakthrough for particular groups was calculated. Also, vaccine breakthroughs in terms of viral variant, vaccine type, and number of doses were evaluated. |
| Collaborator Contribution | Resource from the University of Strathclyde led the statistical analyses for the 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' project. |
| Impact | 1. 'Evaluation of Risk Factors for Postbooster Omicron COVID-19 Deaths in England'. JAMA Netw Open, 2022 Sep 1;5(9):e2233446. doi: 10.1001/jamanetworkopen.2022.33446 2. 'Severe COVID-19 outcomes after full vaccination of primary schedule and initial boosters: pooled analysis of national prospective cohort studies of 30 million individuals in England, Northern Ireland, Scotland, and Wales' Lancet, 2022 15-21 October; 400(10360): 1305-1320. Published online 2022 Oct 14. doi: 10.1016/S0140-6736(22)01656-7 |
| Start Year | 2021 |
| Description | Collaboration with Swansea University |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' was funded from the NCSi grant and led by the University of Edinburgh. The project aimed to undertake a national prospective population-based cohort using routinely collected data across Scotland, with independent replication across the UK Nations' national surveillance datasets. Descriptive analysis was carried out to build a picture of which people have post-vaccine breakthroughs. These results were evaluated in terms of people's immune response after vaccination, using data from serology where available and analysis of how long this protection lasts. Following this, the risk of experiencing vaccine breakthrough for particular groups was calculated. Also, vaccine breakthroughs in terms of viral variant, vaccine type, and number of doses were evaluated. |
| Collaborator Contribution | Resources from Swansea University accessed and analysed Welsh data for the 'Use of national linked healthcare, serology and viral genomic data to identify and characterise post-second and -booster dose vaccine breakthroughs at a population level' project. |
| Impact | 1. 'Evaluation of Risk Factors for Postbooster Omicron COVID-19 Deaths in England'. JAMA Netw Open, 2022 Sep 1;5(9):e2233446. doi: 10.1001/jamanetworkopen.2022.33446 2. 'Severe COVID-19 outcomes after full vaccination of primary schedule and initial boosters: pooled analysis of national prospective cohort studies of 30 million individuals in England, Northern Ireland, Scotland, and Wales' Lancet, 2022 15-21 October; 400(10360): 1305-1320. Published online 2022 Oct 14. doi: 10.1016/S0140-6736(22)01656-7 |
| Start Year | 2021 |
| 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 | Development and evaluation of a tool for predicting risk of short-term adverse outcomes due to COVID-19 in the general UK population |
| Organisation | University of Oxford |
| Department | Nuffield Department of Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The EAVE II team has validated the QCovid algorithm with Scottish health data, including conceptualising the study, developing a protocol, carrying out the analysis and publishing the results. |
| Collaborator Contribution | Researchers in our team have carried out validation |
| Impact | QCovid was developed as a model to estimate a person's risk of being hospitalised or dying due to catching coronavirus. |
| 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. Leveraged MRC Capital funding (World Class Labs) for the Diveplane GEMINAI Commercial License. |
| 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 | We have created and curated a synthetic version of the Welsh Asthma Observatory, which is a 10-15 year cohort of patients in Wales with asthma. This dataset should lower the governance bar for industry access, or for those who want to do modelling or training in health data. |
| 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 | GSK COVID-19 MABs |
| Organisation | GlaxoSmithKline (GSK) |
| Country | Global |
| Sector | Private |
| PI Contribution | The BREATHE and EAVE II teams have obtained governance approvals for the data analysis, worked with the external industry sponsor to finalise the protocol, completed the analysis and provided a report to the sponsor. |
| Collaborator Contribution | GSK provided the study question, sponsorship and funding. University of Strathclyde provided pharmacy input to the study protocol and governance, and data analysis / statistical expertise. |
| Impact | A report has been provided to GSK. |
| Start Year | 2022 |
| Description | GSK COVID-19 MABs |
| Organisation | University of Strathclyde |
| Department | Strathclyde Institute of Pharmacy & Biomedical Sciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The BREATHE and EAVE II teams have obtained governance approvals for the data analysis, worked with the external industry sponsor to finalise the protocol, completed the analysis and provided a report to the sponsor. |
| Collaborator Contribution | GSK provided the study question, sponsorship and funding. University of Strathclyde provided pharmacy input to the study protocol and governance, and data analysis / statistical expertise. |
| Impact | A report has been provided to GSK. |
| Start Year | 2022 |
| Description | Met Office data |
| Organisation | Meteorological Office UK |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Participation in HDR UK visit to Met Office in October 2023, which introduced the Inflammation and Immunity Driver Programme and discussed synergies / opportunities for joint working based on consistently curated respiratory data in all 4 nations of the UK. Consistently curated respiratory data prepared through BREATHE is a foundation for this work. |
| Collaborator Contribution | Some options for joint projects / new linkage opportunities have been presented to Met Office staff and we are awaiting a response. |
| Impact | Currently at exploration stage |
| Start Year | 2023 |
| 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 | ONS joined as collaborator |
| Organisation | Office for National Statistics |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | The EAVE II team and the COVID-19 in pregnancy in Scotland (COPS) team have shared their significant work and expertise with collaborators, to extend our analyses around vaccine effectiveness UK wide. |
| Collaborator Contribution | ONS is leading for England on research questions for follow on work looking at uptake, safety and effectiveness of COVID-19 vaccines in: (1) pregnancy; and (2) Children and Young people |
| Impact | The work is still underway. ONS is was a partner in analyses around COVID-19 vaccination effectiveness in pregnancy, and is a partner in a current vaccine booster effectiveness study. |
| Start Year | 2022 |
| 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 | Pathogen X / UKHSA |
| Organisation | University of Oxford |
| Department | Nuffield Department of Primary Care Health Sciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Collaboration between University of Edinburgh, EAVE II collaborators and University of Oxford to develop a set of well-defined analysis plans that build on associated, field tested, protocols and analysis plans for rapid assessment of pathogen transmission and vaccine and therapeutic effectiveness and safety for potential future respiratory pathogens. We have developed a project analysis plan and described the data to be used to provide insights for future pathogen modelling work. Protocols are in development, adapted from the EAVE II statistical analysis plans and GitHub repository. |
| Collaborator Contribution | Work has only recently started / is ongoing, but builds on previous COVID-19 collaborations funded through MRC, National Core Studies and HDR UK. The University of Oxford is the home of the primary care sentinel network (the Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC)), and is a primary source for disease surveillance in England (around 2000 general practices) and virological sampling data. The RCGP RSC works closely with the UK Health Security Agency to monitor infectious diseases with a focus on respiratory viruses. The RCGP RSC provides vaccine effectiveness estimates and characterises vulnerable populations. |
| Impact | The collaboration began in December 2023, so it is too early to list outputs or outcomes. |
| Start Year | 2023 |
| Description | PrecisionLife |
| Organisation | Precisionlife |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Access to secure Trusted Research Environment through partnership with SAIL Databank. BREATHE has set up the PrecisionLife analytics to enable analysis for a genomics-related asthma severity study. |
| Collaborator Contribution | PrecisionLife applied its unique analytics platform to help define subgroups of patients requiring different treatments and care. |
| Impact | A new analysis environment has been established in SAIL and will be a demonstrator project for future work in this area. They have recently (early 2024) completed an analysis using the datasets provided as part of the BREATHE project. |
| Start Year | 2021 |
| Description | Rapid Outcomes of COVid therapeutics in Eave II |
| Organisation | University of Strathclyde |
| Department | Mathematics and Statistics Strathclyde |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We are leading this piece of work, which seeks to: 1. estimate the proportion of the population that might be eligible for MAb therapy according to current guidelines, 2. estimate the uptake of MAbs by demographics and risk group, 3. investigate the effectiveness of these treatments (alone and in combination) in real world settings, stratified by viral strain, 4. identify factors associated with severe outcomes in those treated with MAbs, 5. determine the safety profile of MAb therapies. |
| Collaborator Contribution | Our partners at Strathclyde are providing high level statistical input and pharmacy expertise to this study. |
| Impact | Initial analysis led to a research publication. GSK commissioned a further collaboration through BREATHE. |
| Start Year | 2022 |
| 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 | Smart Respiratory Products |
| Organisation | Smart Respiratory Products Ltd |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | BREATHE has worked with Smart Respiratory Products (SRP) as a partner on an Innovate UK Fund (Tiny Medical Apps led grant, with SRP to provide devices for work). |
| Collaborator Contribution | SRP are providing support via the BREATHE Industry Forum and have provided over 1-million Peak Flow readings from their devices to the SAIL database, which will shortly be available on the HDRUK Gateway. |
| Impact | Provision of Peak Flow reading data to SAIL environment |
| 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 |
| Description | Use of national linked healthcare, serology and viral genomic data to identify and characterise post-third and -booster dose vaccine breakthroughs at a population level |
| Organisation | University of Birmingham |
| Department | School of Immunity and Infection |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our primary aim is to investigate COVID infection breakthrough after third and booster vaccination and the potential influence of viral variants. This includes post-vaccine re-infection with prior history of COVID-19 illness. |
| Collaborator Contribution | The University of Birmingham (UoB) has been awarded up to £6,674,199 on behalf of UKRI, funded as part of the COVID-19 National Core Studies (NCS), for "Phase 1 COVID-19 Immunity - National Core Study (Phase 1 IMM-NCS)" to coordinate research programmes and infrastructure to ensure key questions on immunity are being answered from basic understanding of the immune response, through duration and nature of natural infection and vaccine induced immunity in clinically at risk and general populations. By working collaboratively we draw fresh insights and increase our collective understanding of how to accelerate control of the COVID-19 pandemic. |
| Impact | This work is at an early stage, having only began in December 2021. Our objectives are to: 1) Estimate the frequency of post-vaccine breakthroughs from linked electronic health records and viral genomic data in Scotland in near real-time. 2) Characterise the demographic, ethnic, socio-economic, immunological and clinical features of post-vaccine breakthroughs. 3) Investigate how these risks vary by vaccine dose, vaccine type, and viral variants. 4) Develop and internally validate a prediction model to assess predictors for post-vaccine breakthroughs. 5) Analyse viral variants, mutations and lineages in post-vaccine breakthroughs, and compare these to viruses in the general population over the same time interval. 6) Replicate the above findings using research-ready national linked surveillance datasets across the other UK nations. |
| Start Year | 2021 |
| Title | RCGP RSC Asthma |
| Description | We wanted to investigate the technical feasibility of developing a near-real time asthma dashboard to support audit and feedback (A&F) interventions for asthma management in primary care. A weekly, automated asthma dashboard with features that can support electronic-A&F cycles that compared key asthma indicators for a GP practice to the average in Oxford-Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC) network could be created: https://tinyurl.com/3ydtrt85 . We extracted cross-sectional data on asthma from 756 participating GP practices in the RCGP RSC database in England comprising 7.6 million registered people. Summary indicators for a GP practice were compared to all participating RCGP RSC practices using practice-level data, on 12-weeks-incidence, annual prevalence, inhaled relievers to preventer, self-management plan given, annual reviews, prednisolone prescriptions, influenza vaccination, pneumococcal vaccination ever (aged =65 years) and current smokers. These are reported in publication "Deploying an asthma dashboard to support quality improvement across a nationally representative sentinel network of 7.6 million people in England" npj Primary Care Respiratory Medicine (2024) 34:18 ; https://doi.org/10.1038/s41533-024-00377-8 |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Impact | Not evaluated |
| URL | https://public.tableau.com/views/Asthma_MyPracticeDashboard/Asthma?:language=en-GB&:display_count=n&... |
| Description | BPNA Annual Conference 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The meeting (January 2023) provided opportunities to share the latest research from diverse areas of child neurology, from lab-based basic science to clinical trials and patient experiences. Professor Sir Aziz Sheikh presented in the session on Health Informatics, on "Data-enabled responses to the COVID-19 pandemic". |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://bpna.org.uk/conference/2023/index.php?contentid=1310 |
| Description | Bowser Administration Delegation visit |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | The Washington DC Mayor's Office organised a visit to the University of Edinburgh by 16 companies and 4 government as part of an inward trade mission. The visit was designed to promote the UK as an investment destination for DC companies and position the UK as a strategic partner for investment, as well as to attract UK Healthcare and Life Science organisations to Washington DC. The presentations included discussion of the work done during the COVID-19 pandemic under the EAVE II platform umbrella of research projects. |
| Year(s) Of Engagement Activity | 2022 |
| Description | COALESCE - first study of 67 million people using EHRs across all 4 UK nations |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | COALESCE is the culmination of work that started with EAVE II / BREATHE and generated new electronic health records collaborations with partners in England, Wales and Northern Ireland. Publication of this landmark study in the Lancet enabled the HDR UK Communications team to frame a positive story about the use of health data. They worked with the Science Media Centre (SMC) to set up a journalist briefing session, leading to wide coverage on the BBC news app and website, the Guardian, the Independent and the Times. Cathie Sudlow was interviewed on the BBC Radio 4 Today Programme. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/first-whole-uk-population-study-reveals-impact-of-covid-19-under-vaccin... |
| Description | Celebrating 10 years of the EXCEED study |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | In 2023, the EXCEED Study: a study of Genes, Environment and Health celebrated its 10th anniversary. To mark this special occasion, a series of 10 podcasts were recorded with Professor Turi King, and researchers who have used the EXCEED cohort to investigate a range of research questions. The series covers a broad range of topics including: lung function impairment, dynamic consent, the genetics of COVID-19, fatty liver disease, abdominal aortic aneurysm, personalised exercise, thyroid disease, treatment resistant depression and cough as a side effect of blood pressure treatment. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://citizen.le.ac.uk/podcasts/exceed/ |
| Description | Data and Connectivity NCS: Achievements, Lessons Learned and Legacy |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | The COVID-19 National Core Studies (NCS) were a crucial part of the UK's pandemic response. One of the aims of this event, focusing on Data and Connectivity, was to disseminate examples of impactful, policy-relevant science from the NCS programme. Prof Sir Aziz Sheikh presented an impact case study with examples from COVID-19 vaccines pharmacovigilance (DACVAP1 and DACVAP2) and the EAVE II platform. |
| Year(s) Of Engagement Activity | 2023 |
| Description | EXCEED 10th Year anniversary event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | The EXCEED study - Extended Cohort for E-health, Environment and DNA - looks at the causes of long-term health conditions by collecting information about genes and lifestyle. A celebratory event was held to mark the 10-year anniversary of this major health study, which has recruited 11,000 patients across the county. It brought together research participants from across Leicester, Leicestershire and Rutland, as well as the public, with healthcare workers and scientists, to highlight the findings of nine of the 54 studies undertaken as part of EXCEED. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://le.ac.uk/news/2023/august/exceed |
| Description | HDR UK Board meeting: Science and Infrastructure Showcase |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The intended purpose of the meeting was to demonstrate impact from HDR UK support, in the form of research that institutions cannot do by themselves and encouraging early adoption. Prof Sir Aziz Sheikh gave a presentation on "Data-enabled Responses to Policy and Delivery Challenges". He explored the need for learning healthcare systems; talked about real-world delivery of data-enabled responses during the COVID-19 pandemic (BREATHE / EAVE II / National Core Studies) including analyses undertaken at the request of government and global health organisations; the use of analysis protocols and pooled analyses across several national TREs to demonstrate vaccine effectiveness in different groups; application of learning from this work to inform work on NHS Winter Pressures; analysis of respiratory-related hospital admissions; and the ongoing need for whole system intelligence. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Media briefing events and working extensively with journalists on their stories |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Presentation of information about safety and effectiveness of COVID-19 vaccines |
| Year(s) Of Engagement Activity | 2021,2022 |
| Description | NIHR Respiratory Translational Research Collaboration: National Asthma Research Strategy Group meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The NIHR Respiratory Translational Research Collaboration (Respiratory TRC) brings together internationally recognised investigators in the UK's leading centres of excellence to carry out experimental and early phase research with industry, charities and other funders. Prof Jenni Quint spoke at the National Asthma Research Strategy Group meeting about "Digital and data / HDR UK workstream - where next?" |
| Year(s) Of Engagement Activity | 2023 |
| Description | National Data Assets & Opportunities for Collaboration across the UK Nations and Beyond |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | On 22 September 2022, our team delivered a webinar discussing how they have worked with near real-time healthcare data during the COVID-19 pandemic and what we have achieved and learned from this. We highlighted the importance of using patient and public voices to shape our work throughout. We presented an overview of the national data assets used (EAVE II, RCGP RSC, SAIL and the Honest Broker Service), and explained the practicalities behind how the team went about conducting pooled, UK-wide analyses. We also presented work done with international partners in Brazil looking at effectiveness and waning of the Pfizer BioNTech vaccine in children and young people. Finally, we gave some pointers about how other researchers can request access to these datasets for their own research. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.ed.ac.uk/usher/eave-ii/connected-projects/dac-vap-2/watch-our-webinar |
| Description | Presentation on Health Data at a Research Insights event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | The Research Insights series are free online public events exploring the science and research taking place in our College. Prof Sheikh and Dr Vasileiou presented about health data, how it is kept safe and secure, and how information about people's health helps to inform public health policy decisions. They explained how health data helped scientists to figure out how the effectiveness of the first doses of Covid-19 vaccine, and how health data are being used to track the Covid-19 pandemic. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentations to government bodies, including GO-Science, JCVI, MHRA, National Core Studies |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presentation of data summarising safety and effectiveness of COVID-19 vaccines |
| Year(s) Of Engagement Activity | 2021,2022 |
| Description | Presentations to inter-governmental bodies e.g. WHO |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presentation of data summarising safety and effectiveness of COVID-19 vaccines |
| Year(s) Of Engagement Activity | 2021,2022 |
| Description | Showcase event for the Digital Innovation Hub Programme |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | This free, one-day event led by HDR UK showcased the latest developments in technology, infrastructure and standards that are supporting trustworthy research with health data. The event connected colleagues working in the data field across healthcare, academia, charities, industry and patient groups, by showcasing the impacts of the Digital Innovation Hubs Programme. The showcase included the nine Health Data Research Hubs, the Health Data Research Innovation Gateway and the UK Health Data Research Alliance. Key themes included the importance of earning and maintaining public trust, the impacts of the Health Data Research Hubs, improvements in data discovery and opportunities to streamline access, and the benefits of collaboration and partnership. The £400K capital funding from MRC was leveraged as a direct result of the BREATHE presentation at this event. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news-opinion-events/events/building-a-legacy-for-uk-health-data-research-inf... |
| Description | Standing Committee on Pandemic Preparedness |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The Standing Committee on Pandemic Preparedness is a permanent advisory group to the Scottish Government, established to bring together scientists and technical experts to advise the Scottish Government on the future risks from pandemics and to ensure preparedness. The group makes recommendations to the First Minister and Scottish Cabinet. |
| Year(s) Of Engagement Activity | 2022,2023,2024 |
| URL | https://www.gov.scot/groups/standing-committee-on-pandemic-preparedness |
| Description | Webinar: Introducing Inflammation and Immunity |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The webinar was to introduce the HDR UK Inflammation and Immunity Driver Programme to a wider audience; showcase the team's previous work in collaborative and standardised data curation for common respiratory conditions across the 4 UK nations (funded by BREATHE, MRC and Imperial BRC); and provide an opportunity for audience members to either ask questions about the programme, or about what to expect when engaging with our partnered data providers (CPRD, DataLoch, Honest Broker Service and SAIL Databank) |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.ed.ac.uk/usher/inflammation-and-immunity/events/introducing-inflammation-and-immunity |
| Description | World Innovation Summit for Health (WISH) Forum on Health System Resilience |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Sir Aziz Sheikh took part in a moderated panel discussion at WISH 2022 on how real-world data can help us to prepare better for the next pandemic. He used examples from EAVE II, BREATHE and associated projects to set the scene, and highlighted the value of data as one of the greatest assets of government. He was also co-author on a publication which was launched at the event: El Akoum M, Dhami S, Thompson D, Sheikh A. Building health system resilience: A roadmap for navigating future pandemics. Doha, Qatar: World Innovation Summit for Health, 2022. ISBN: 978-1-913991-26-5 |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://2022.wish.org.qa/ |