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The COVID-19-Curated and Open Analysis and Research Platform (CO-CONNECT) project worked with 22 organizations across the United Kingdom to build a federated platform, enabling researchers to instantaneously and dynamically query federated datasets to find relevant data for their study. Finding relevant data takes time and effort, reducing the efficiency of research. Although data controllers could understand the value of such a system, there were significant challenges and delays in setting up the platform in response to COVID-19. This paper aims to present the challenges and lessons learned from the CO-CONNECT project to support other similar initiatives in the future. The project encountered many challenges, including the impacts of lockdowns on collaboration, understanding the new architecture, competing demands on people’s time during a pandemic, data governance approvals, different levels of technical capabilities, data transformation to a common data model, access to granular-level laboratory data, and how to engage public and patient representatives meaningfully on a highly technical project. To overcome these challenges, we developed a range of methods to support data partners such as explainer videos; regular, short, “touch base” videoconference calls; drop-in workshops; live demos; and a standardized technical onboarding documentation pack. A 4-stage data governance process emerged. The patient and public representatives were fully integrated team members. Persistence, patience, and understanding were key. We make 8 recommendations to change the landscape for future similar initiatives. The new architecture and processes developed are being built upon for non–COVID-19–related data, providing an infrastructural legacy.

BackgroundCOVID-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. ObjectiveWe aimed to transform UK COVID-19 diagnostic data sets to be findable, accessible, interoperable, and reusable (FAIR). MethodsA 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. ResultsA 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. ConclusionsCO-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.

The prevalence of the coronavirus SARS-CoV-2 disease has resulted in the unprecedented collection of health data to support research. Historically, coordinating the collation of such datasets on a national scale has been challenging to execute for several reasons, including issues with data privacy, the lack of data reporting standards, interoperable technologies, and distribution methods. The coronavirus SARS-CoV-2 disease pandemic has highlighted the importance of collaboration between government bodies, healthcare institutions, academic researchers and commercial companies in overcoming these issues during times of urgency. The National COVID-19 Chest Imaging Database, led by NHSX, British Society of Thoracic Imaging, Royal Surrey NHS Foundation Trust and Faculty, is an example of such a national initiative. Here, we summarise the experiences and challenges of setting up the National COVID-19 Chest Imaging Database, and the implications for future ambitions of national data curation in medical imaging to advance the safe adoption of artificial intelligence in healthcare.