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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 …
Collaborators Members of the working group: RCPCH Programme Board—Neena Modi, Jenny Kurinczuk, Alan McMahon, John Thain, Jyotsna Vohra. Child Death Overview Working Group—Rachel Knowles (UCL Institute of Child Health), Alison Macfarlane (City University), Berit Müller-Pebody (Health Protection Agency), Roger Parslow (University of Leeds), Sonia Saxena (Imperial College), Anjali Shah (University of Oxford), Peter Sidebotham (University of Warwick) and Charles Stiller (University of Oxford).
Contributors ND drafted the letter with input from RG, all authors commented on drafts.
Fund Clinical Outcome Review Programme: Child Health Reviews UK is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of the funding bodies of the Department of Health, the health department of the Scottish Government, the health department of the Welsh Government, the States of Jersey, States of Guernsey and the Isle of Man.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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