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The UK government promotes the availability of population-based electronic health data as a resource to drive efficiencies in care, attract inward investment in research and inform policy.1 However, there is a lack of information about the resources, expertise, time and cost involved in accessing usable data.2 We report our experience of accessing individual patient data from the four countries in the UK for a study of child deaths.
The aim of our research was to evaluate the characteristics of children who die, by using administrative data to take into account the entire healthcare trajectory of the child.3 We benefitted from the legislative framework designed to make access easier for research undertaken to support the work of the NHS as our study was commissioned on behalf of the Secretary of State.4 In addition, there were representatives from all four departments of health on the project advisory board who, together with …
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