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‘Nothing about them, without them’ is the clarion call of those who are committed to genuine user participation in research. The James Lind Alliance brings patients, carers and clinicians together as priority sharing partnerships to ensure that research is targeted at questions that matter to these interested parties. In 2010, we contributed to the Database of Uncertainties of the Effects of Treatments (DUETs). Three hundred ninety-eight questions regarding treatments and their effects were produced from focus groups composed of people with epilepsy, their carers and relatives, or epilepsy clinicians and researchers.1 The questions were subsequently ranked by participants and thematically grouped to identify similarities and comparisons. The top-ranked questions were all deemed ‘unanswered’ at the time of publication following thorough scrutiny of online databases.2 It was our hope by publishing the report and by uploading all questions to the National Health Service Evidence DUETs webpage2 that we would encourage researchers to preferentially focus on these questions. Epilepsy was one of the first partnership exercises to be launched, and we aim to assess the influence of the process since the priorities were published. We sought to identify if the top 20 ranked questions from professionals and patients had been answered over the last 6 years (table 1) (see online supplementary data file 1).
We searched the PubMed and Cochrane …
Competing interests RHT receives/received research support from Epilepsy Research UK, Action Medical Research, Epilepsy Action and the Dravet Society; is an associate editor of Practical Neurology and web editor of Seizure and has received honoraria from Eisai, Sanofi and UCB.
Provenance and peer review Not commissioned; externally peer reviewed.
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