A Hybrid Architecture (CO-CONNECT) to Facilitate Rapid Discovery and Access to Data Across the United Kingdom in Response to the COVID-19 Pandemic: Development Study.

Autor: Jefferson E; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Cole C; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Mumtaz S; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Cox S; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Giles TC; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Adejumo S; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Urwin E; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Lea D; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Macdonald C; Usher Institute, University of Edinburgh, Edinburgh, United Kingdom., Best J; Digital Research Service, University of Nottingham, Nottingham, United Kingdom.; Health Data Research UK, London, United Kingdom., Masood E; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Milligan G; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Johnston J; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Horban S; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Birced I; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Hall C; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Jackson AS; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Collins C; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Rising S; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Dodsley C; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Hampton J; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Hadfield A; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Santos R; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Tarr S; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Panagi V; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Lavagna J; Digital Research Service, University of Nottingham, Nottingham, United Kingdom., Jackson T; Usher Institute, University of Edinburgh, Edinburgh, United Kingdom., Chuter A; Lay Partnership in Healthcare Research, Lindfield, United Kingdom., Beggs J; Health Informatics Centre, Division of Population and Health Genomics, School of Medicine, University of Dundee, Dundee, United Kingdom., Martinez-Queipo M; National Health Service Digital, London, United Kingdom., Ward H; School of Public Health, Imperial College London, London, United Kingdom., von Ziegenweidt J; Department of Haemotology, University of Cambridge, Cambridge, United Kingdom.; National Institute for Healthcare Research BioResource, Cambridge University Hospitals NHS Foundation, Cambridge Biomedical Campus, Cambridge, United Kingdom., Burns F; Centre for Public Health, Belfast Institute of Clinical Science, Queens University Belfast, Belfast, United Kingdom., Martin J; Blizard Institute, Faculty of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom., Sebire N; Institute of Child Health, Great Ormond Street Hospital, London, United Kingdom., Morris C; Public Health Scotland, Edinburgh, United Kingdom., Bradley D; Centre for Public Health, Institute of Clinical Science, Queen's University Belfast, Belfast, United Kingdom.; Public Health Agency, Belfast, United Kingdom., Baxter R; EPCC, University of Edinburgh, Edinburgh, United Kingdom., Ahonen-Bishopp A; BC Platforms, Espoo, Finland., Smith P; BC Platforms, Espoo, Finland., Shoemark A; Molecular and Clinical Medicine, School of Medicine, University of Dundee, Dundee, United Kingdom., Valdes AM; School of Medicine, University of Nottingham, Nottingham, United Kingdom., Ollivere B; School of Medicine, University of Nottingham, Nottingham, United Kingdom., Manisty C; Institute of Cardiovascular Sciences, University of College London, London, United Kingdom., Eyre D; Big Data Institute, University of Oxford, Oxford, United Kingdom., Gallant S; Molecular and Clinical Medicine, School of Medicine, University of Dundee, Dundee, United Kingdom., Joy G; Barts Heart Centre, London, United Kingdom., McAuley A; Clinical and Protecting Health Directorate, Public Health Scotland, Glasgow, United Kingdom., Connell D; School of Medicine, University of Dundee, Dundee, United Kingdom., Northstone K; Population Health Sciences, Avon Longitudinal Study of Parents and Children, Bristol, United Kingdom., Jeffery K; Radcliffe Department of Medicine, Oxford University, Oxford, United Kingdom.; Oxford University Hospitals NHS Foundation Trust, John Radcliffe Hospital, Oxford, United Kingdom., Di Angelantonio E; British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom.; British Heart Foundation Centre of Research Excellence, University of Cambridge, Cambridge, United Kingdom.; National Institute for Health Research Blood and Transplant Research Unit in Donor Health and Behaviour, University of Cambridge, Cambridge, United Kingdom.; Health Data Research UK Cambridge, Wellcome Genome Campus, University of Cambridge, Cambridge, United Kingdom.; Health Data Science Research Centre, Human Technopole, Milan, Italy., McMahon A; British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom.; National Institute for Health Research Blood and Transplant Research Unit in Donor Health and Behaviour, University of Cambridge, Cambridge, United Kingdom., Walker M; British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom.; National Institute for Health Research Blood and Transplant Research Unit in Donor Health and Behaviour, University of Cambridge, Cambridge, United Kingdom., Semple MG; Health Protection Research Unit in Emerging and Zoonotic Infections, Institute of Infections, University of Liverpool, Liverpool, United Kingdom.; Respiratory Department, Alder Hey Children's Hospital, Liverpool, United Kingdom., Sims JM; University College London, London, United Kingdom., Lawrence E; BioIndustry Association, London, United Kingdom., Davies B; School of Public Health, Imperial College London, London, United Kingdom., Baillie JK; Outbreak Data Analysis Platform, University of Edinburgh, Edinburgh, United Kingdom., Tang M; NHS England, Worcestershire, United Kingdom., Leeming G; Civic Data Cooperative, Digital Innovation Facility, University of Liverpool, Liverpool, United Kingdom., Power L; Public Health England, London, United Kingdom., Breeze T; Avon Longitudinal Study of Parents and Children, Bristol Medical School, University of Bristol, Bristol, United Kingdom., Murray D; University of Birmingham, Birmingham, United Kingdom.; University Hospital Coventry & Warwickshire NHS Trust, Coventry, United Kingdom., Orton C; Population Data Science, Swansea University Medical School, Swansea, United Kingdom., Pierce I; Barts Heart Centre, St Bartholomew's Hospital, Barts Health NHS Trust, London, United Kingdom.; Institute of Cardiovascular Science, University College London, London, United Kingdom., Hall I; Nottingham Biomedical Research Centre, School of Medicine, University of Nottingham, Nottingham, United Kingdom., Ladhani S; Immunisation and Countermeasures Division, Public Health England Colindale, London, United Kingdom., Gillson N; UK Health Security Agency, London, United Kingdom., Whitaker M; School of Public Health, Imperial College London, London, United Kingdom., Shallcross L; Institute of Health Informatics, UCL, London, United Kingdom., Seymour D; Health Data Research UK, London, United Kingdom., Varma S; Health Data Research UK, London, United Kingdom., Reilly G; Health Data Research UK, London, United Kingdom., Morris A; Health Data Research UK, London, United Kingdom., Hopkins S; Public Health England, London, United Kingdom., Sheikh A; Centre for Population Health Sciences, Usher Institute, University of Edinburgh, Edinburgh, United Kingdom., Quinlan P; Digital Research Service, University of Nottingham, Nottingham, United Kingdom.; School of Medicine, University of Nottingham, Nottingham, United Kingdom.
Jazyk: angličtina
Zdroj: Journal of medical Internet research [J Med Internet Res] 2022 Dec 27; Vol. 24 (12), pp. e40035. Date of Electronic Publication: 2022 Dec 27.
DOI: 10.2196/40035
Abstrakt: Background: COVID-19 data have been generated across the United Kingdom as a by-product of clinical care and public health provision, as well as numerous bespoke and repurposed research endeavors. Analysis of these data has underpinned the United Kingdom's response to the pandemic, and informed public health policies and clinical guidelines. However, these data are held by different organizations, and this fragmented landscape has presented challenges for public health agencies and researchers as they struggle to find relevant data to access and interrogate the data they need to inform the pandemic response at pace.
Objective: We aimed to transform UK COVID-19 diagnostic data sets to be findable, accessible, interoperable, and reusable (FAIR).
Methods: A federated infrastructure model (COVID - Curated and Open Analysis and Research Platform [CO-CONNECT]) was rapidly built to enable the automated and reproducible mapping of health data partners' pseudonymized data to the Observational Medical Outcomes Partnership Common Data Model without the need for any data to leave the data controllers' secure environments, and to support federated cohort discovery queries and meta-analysis.
Results: A total of 56 data sets from 19 organizations are being connected to the federated network. The data include research cohorts and COVID-19 data collected through routine health care provision linked to longitudinal health care records and demographics. The infrastructure is live, supporting aggregate-level querying of data across the United Kingdom.
Conclusions: CO-CONNECT was developed by a multidisciplinary team. It enables rapid COVID-19 data discovery and instantaneous meta-analysis across data sources, and it is researching streamlined data extraction for use in a Trusted Research Environment for research and public health analysis. CO-CONNECT has the potential to make UK health data more interconnected and better able to answer national-level research questions while maintaining patient confidentiality and local governance procedures.
(©Emily Jefferson, Christian Cole, Shahzad Mumtaz, Samuel Cox, Thomas Charles Giles, Sam Adejumo, Esmond Urwin, Daniel Lea, Calum Macdonald, Joseph Best, Erum Masood, Gordon Milligan, Jenny Johnston, Scott Horban, Ipek Birced, Christopher Hall, Aaron S Jackson, Clare Collins, Sam Rising, Charlotte Dodsley, Jill Hampton, Andrew Hadfield, Roberto Santos, Simon Tarr, Vasiliki Panagi, Joseph Lavagna, Tracy Jackson, Antony Chuter, Jillian Beggs, Magdalena Martinez-Queipo, Helen Ward, Julie von Ziegenweidt, Frances Burns, Joanne Martin, Neil Sebire, Carole Morris, Declan Bradley, Rob Baxter, Anni Ahonen-Bishopp, Paul Smith, Amelia Shoemark, Ana M Valdes, Benjamin Ollivere, Charlotte Manisty, David Eyre, Stephanie Gallant, George Joy, Andrew McAuley, David Connell, Kate Northstone, Katie Jeffery, Emanuele Di Angelantonio, Amy McMahon, Mat Walker, Malcolm Gracie Semple, Jessica Mai Sims, Emma Lawrence, Bethan Davies, John Kenneth Baillie, Ming Tang, Gary Leeming, Linda Power, Thomas Breeze, Duncan Murray, Chris Orton, Iain Pierce, Ian Hall, Shamez Ladhani, Natalie Gillson, Matthew Whitaker, Laura Shallcross, David Seymour, Susheel Varma, Gerry Reilly, Andrew Morris, Susan Hopkins, Aziz Sheikh, Philip Quinlan. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.12.2022.)
Databáze: MEDLINE
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