Suchergebnisse

Contact tracing and lockdown are health policies being used worldwide to combat the coronavirus (COVID-19). The UK National Health Service (NHS) Track and Trace Service has plans for a nationwide app that notifies the need for self-isolation to those in contact with a person testing positive for COVID-19. To be successful, such an app will require high uptake, the determinants and willingness for which are unclear but essential to understand for effective public health benefit. The objective of this study was to measure the determinants of willingness to participate in an NHS app-based contact-tracing programme using a questionnaire within the Care Information Exchange (CIE)—the largest patient-facing electronic health record in the NHS. Among 47,708 registered NHS users of the CIE, 27% completed a questionnaire asking about willingness to participate in app-based contact tracing, understanding of government advice, mental and physical wellbeing and their healthcare utilisation—related or not to COVID-19. Descriptive statistics are reported alongside univariate and multivariable logistic regression models, with positive or negative responses to a question on app-based contact tracing as the dependent variable. 26.1% of all CIE participants were included in the analysis (N = 12,434, 43.0% male, mean age 55.2). 60.3% of respondents were willing to participate in app-based contact tracing. Out of those who responded 'no', 67.2% stated that this was due to privacy concerns. In univariate analysis, worsening mood, fear and anxiety in relation to changes in government rules around lockdown were associated with lower willingness to participate. Multivariable analysis showed that difficulty understanding government rules was associated with a decreased inclination to download the app, with those scoring 1–2 and 3–4 in their understanding of the new government rules being 45% and 27% less inclined to download the contact-tracing app, respectively; when compared to those who rated their understanding as 5–6/10 (OR for ...

IntroductionThe BREATHE Health Data Research Hub is a consortium of five academic institutions and several industry partners seeking to facilitate and accelerate respiratory science initiatives and outcomes. Unlocking organisational, jurisdictional, and scientific challenges, such as differing and inherent complexities with data standards, incongruous governance, and disparate data access mechanisms for over 100 diverse UK datasets are key aims.
Objectives and ApproachCentral to the data effort is the UK Secure eResearch Platform (SeRP UK), and its flagship tenancy, the SAIL Databank. Onboarding datasets, making them remotely available to the respiratory research community, is a key approach. Datasets targeted range from population cohort studies, to respiratory trials data, routine healthcare datasets, and specialist 'omics data. Partnerships with national safe havens and providers such as eDRIS and NHS Digital will enable BREATHE to expedite and improve wider sharing of datasets for the respiratory science.
Data improvements focus on datasets from primary, secondary, and tertiary care from national healthcare systems, 'respiratorising' these datasets and increasing utility for academic and industry respiratory scientists. Incorporating dataset metadata and access permutations into national cataloguing systems at HDR UK, standardising metadata, and interoperability for in-scope datasets form a concerted data quality improvement effort.
ResultsFacilitating data sharing through initiatives such as BREATHE will increase visibility and accessibility for datasets within respiratory science, whilst addressing national cultural and governance issues to data sharing. BREATHE data sharing processes will allow for team science to be undertaken in a highly collaborative manner and allow for best practise in data collection and sharing to flow to nationwide datasets in respiratory science.
Conclusion / ImplicationsCollaborative hubs with scientific domain expertise can be created and leveraged to accelerate data sharing and data science within the scientific area. These collaborative efforts can however be translated to other disease-specific efforts, and indeed disease agnostic platform solutions.

Objective and ApproachHealth Data Research UK, the UK national institute for health data science, is coordinating efforts alongside national academic partners to streamline data curation at disease, population, and data structure level to enhance data offerings and provide networked data infrastructure supporting whole-UK research. Due to clinical, coding, and system differences across the constituent countries of the UK, data is often not standardised for whole-UK analyses, creating burden on research teams and leading to long data preparation times in order to run even distributed analyses.
The approach to solve this is multi-faceted, including deploying data curation and cohort creation algorithms into health data providers' environments, and through the novel integration of federated analytics solutions (such as those piloted through recent national infrastructure programmes) improving data access and research deployment efficiency.
ResultsStandardising data through clinical and structural data curation directly deployed to health data providers creates a framework for whole-UK studies to be readily achievable, and provide the data infrastructure base to integrate new technical federated analytics solutions to deploy and reproduce analytics without unnecessary large scale data migration. Conclusions and ImplicationsSystematic curation of health data within national data providing organisations provides flexibility and choice for researchers in terms of the data they will apply for to answer vital research questions affecting the UK populace. Such advances will improve the quality and efficiency of research for all corners of the UK, and create a community of practice in terms of developing data from health systems to research environments.

ObjectivesThe BREATHE Health Data Research Hub for Respiratory Health was formed in October 2019 as a multi-site academic consortium with multiple industrial partners via an Industry Forum and across its wider network. BREATHE's main mission is enhancing data services within respiratory science, funded by the UKRI Industrial Strategy Challenge Fund.
ApproachBREATHE leveraged expertise across its founding sites and industrial partners to create data services which could be used by multiple sectors of collaborator. Across the founding sites, BREATHE was able to mobilise datasets housed within national TREs to form real-world evidence eCohorts for rapid and efficient respiratory study (Asthma, COPD, ILD), and has worked with specialists in cohort study and genomic data to house and supply these from within our partner TRE, SAIL Databank. As well as data assets, BREATHE is able to provide clinical and data expertise to collaborators for grant submissions and on bespoke respiratory science projects.
ResultsIncluding a significant period of work during the pandemic supporting COVID-19 research and also focusing on other respiratory disease science support, BREATHE is now well-placed to move towards a sustainable operating plan post-grant from March 2023. Due to the approach taken in maximising data services for multiple sectors, BREATHE is positioned to provide data linkage and sharing services (making use of its TRE, SAIL Databank), providing analytic and clinical support to respiratory research projects for customers in multiple sectors (Pharma, SMEs, Academia, NHS, Charities), and advancing synthetic data and software development, again in partnership with SAIL and our wider industry partners.
ConclusionAs of March 2022, BREATHE has established a portfolio of data services and projects interfacing with multiple sectors of collaborator in enhancing respiratory science projects across the UK. With population-level data assets representing Wales, Scotland, and England and the ability to work with the Northern Ireland infrastructure housed at Swansea University, BREATHE supports 4-nation respiratory science in RWE data, and provides clinical and data linkage expertise to studies such as longitudinal cohorts, pharma companies, and contract research organisations.

ObjectiveThis study aimed to create harmonised datasets for asthma, chronic obstructive pulmonary disease (COPD), and Interstitial Lung Disease (ILD), and subsequently use them to calculate the incidence and prevalence of these diseases across three UK nations (England, Wales, and South-East Scotland).
ApproachHarmonised research-ready datasets were created using three electronic healthcare record databases. Records were selected between 01/01/2004 and 31/12/2019, with yearly age and sex standardised incidence and prevalence rates calculated.
ResultsIn 2019, the incidence rates for asthma were: England, 0.89 (95%CI: 0.88–0.90); Wales, 0.66 (0.65–0.68); and South-East Scotland, 0.67 (0.64–0.71), which were all lower than in 2004. Incidence rates of COPD in England were 0.83 (0.82–0.85) and 0.67 (0.65–0.69) in Wales, which were both lower than in 2004, but Scotland remained similar at 1.06 (0.99–1.13). Incidence rates of ILD were: England, 3.27 (3.05–3.50); Wales, 1.39 (1.27–1.53); and Scotland, 1.63 (1.36–1.95), which were all higher than in 2004. Between 2004 and 2019, the prevalence of all three diseases increased across all three nations.
ConclusionsSolving differences in coding between CPRD, SAIL Databank, and DataLoch databases enabled comparable cohorts to be created and the first harmonised UK estimates of incidence and prevalence for asthma, ILD, and COPD.
ImplicationsHarmonised studies of asthma, COPD, and ILD across the UK can now be performed. The code produced is publicly available to facilitate future research, which can be adapted for other conditions and databases.