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Data as infrastructure: Systematic data curation addressing fundamental data content differences across the UK

Chris Orton, Lara Edwards, David Seymour, Monica Jones, Philip Quinlan, Simon Thompson · International Journal of Population Data Science · 2024

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 technic

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