Towards breaking down cleft data silos to improve clinical research and patient outcomes

Robust clinical data collection and recording of outcomes, allowing national audit and standard setting, has been fundamental to dramatically improving UK cleft care over the past two decades.12 In the UK valuable information, including demographics, clinical outcomes, and photographs, is held by the Clinical Standards Advisory Group (CSAG),12 the 11 administrative cleft clinic units, the Cleft Collective (a UK based, longitudinal cohort study), and the Cleft Registry and Audit Network. Consequently, facial images of people with a cleft are locked in silos of single units, unavailable for research in other units despite appropriate consent.In his recent review Ben Goldacre stated: “At present the system relies on multiple small data projects that do not join up, distributing large volumes of the same patient records to an uncountable range of very different sites for different projects and teams.”3 He suggests building secure analytical platforms called trusted research environments (TREs), and making these…
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