CO-CONNECT: A hybrid architecture to facilitate rapid discovery and access to UK wide data in the response to the COVID-19 pandemic (Preprint)
Author:
Jefferson EmilyORCID, Cole ChristianORCID, Mumtaz ShahzadORCID, Cox SamORCID, Giles Tom, Adejumo Samuel, Urwin EsmondORCID, Lea Daniel, McDonald Calum, Best Joseph, Masood Erum, Milligan GordonORCID, Johnston JennyORCID, Horban ScottORCID, Birced Ipek, Hall ChristopherORCID, Jackson AaronORCID, Collins Clare, Rising Sam, Dodsley Charlotte, Hampton Jill, Hadfield Andrew, Santos Roberto, Tarr Simon, Panagi Vasiliki, Lavagna Joseph, Jackson TracyORCID, Chuter AntonyORCID, Beggs Jillian, Martinez-Queipo MagdalenaORCID, Ward HelenORCID, von Ziegenweidt JulieORCID, Burns FrancesORCID, Martin JoORCID, Sebire NeilORCID, Morris CaroleORCID, Bradley DeclanORCID, Baxter Rob, Ahonen-Bishop AnniORCID, Shoemark AmeliaORCID, Valdes AnaORCID, Ollivere Benjamin JORCID, Manisty CharlotteORCID, Eyre David WilliamORCID, Gallant StephanieORCID, Joy GeorgeORCID, McAuley AndrewORCID, Connell David WORCID, Northstone KateORCID, Jeffery Katie JMORCID, Di Angelantonio EmanueleORCID, McMahon AmyORCID, Walker MatthewORCID, Semple Malcolm GracieORCID, Sims Jessica MaiORCID, Lawrence EmmaORCID, Davies BethanORCID, Baillie J KennethORCID, Tang Ming, Leeming GaryORCID, Power LindaORCID, Breeze ThomasORCID, Gilson NatalieORCID, Murray Duncan JORCID, Orton ChrisORCID, Pierce IainORCID, Hall IanORCID, Ladhani ShamezORCID, Whitaker MatthewORCID, Shallcross LauraORCID, Seymour DavidORCID, Varma SusheelORCID, Reilly GerryORCID, Morris AndrewORCID, Hopkins Susan, Sheikh AzizORCID, Quinlan PhilipORCID
Abstract
BACKGROUND
COVID-19 data have been generated across the UK as a by-product of clinical care and public health provision, and numerous bespoke and repurposed research endeavours. Analysis of these data has underpinned the UK’s response to the pandemic and informed public health policies and clinical guidelines. However, these data are held by different organisations and this fragmented landscape has presented challenges for public health agencies and researchers as they struggle to find, navigate permissions to access and interrogate the data they need to inform the pandemic response at pace.
OBJECTIVE
To transform UK COVID-19 diagnostic datasets to be Findable, Accessible, Interoperable and Reusable (FAIR).
METHODS
A federated infrastructure model was rapidly built to enable the automated and reproducible mapping of health Data Partners’ pseudonymised data to the OMOP 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
56 datasets from 19 organisations are being connected to the federated network. The data includes research cohorts and COVID-19 data collected through routine health care provision linked to longitudinal healthcare records and demographics. The infrastructure is live, supporting aggregate level querying of data across the UK.
CONCLUSIONS
CO-CONNECT was developed by a multidisciplinary team enabling rapid COVID-19 data discovery, instantaneous meta-analysis across data sources, and is researching streamlined data extraction for egress into a Trusted Research Environment (TRE) 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 whilst maintaining patient confidentiality and local governance procedures.
CLINICALTRIAL
Publisher
JMIR Publications Inc.
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