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Lookup NU author(s): Dr Rhys ThomasORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).
© 2024 The Author(s)Purpose: Research into epilepsy has experienced decades of chronic underfunding compared to other neurological conditions despite its prevalence and seriousness. To evidence the need for greater investment, the Epilepsy Research Institute (formerly Epilepsy Research UK) funded, led and managed a James Lind Alliance (JLA) Priority Setting Partnership (PSP). This “industry standard” methodology brings together healthcare professionals, patients, carers and patient group representatives to identify and prioritise research uncertainties within a defined area of health or care. Methods: The UK Epilepsy PSP is a once-in-a-generation, national consensus that collated and ranked the research priorities of the UK epilepsy and associated condition community. Following JLA methodology, this 18-month project engaged over 100 patient groups and 5000 people affected by and working in epilepsy, including medics and allied healthcare professionals, from across the UK. Results: Over 5400 priorities were received, with anti-seizure medication, sudden unexpected death in epilepsy (SUDEP) and epilepsy in women among the most frequently reported themes. The responses received were categorised and translated into distinct, researchable questions. Questions were excluded if deemed to be “answered” following an evidence check, while research uncertainties (i.e. unanswered and partially answered questions) formed the basis of a second, shortlisting survey. The shortlisted questions were then discussed and debated at the final workshop by participants that broadly represented the UK epilepsy and associated condition community. The final ranking and Top Ten priorities for research into epilepsy were then agreed. Conclusion: The aim of the UK Epilepsy PSP is to encourage and inspire researchers to investigate the research areas prioritised by those most affected by the condition and provide the evidence of need to aid future policy making discussions and support research funding applications.
Author(s): Norton AC, Twohig-Bennett C, Smeaton M, Marson A, Armstrong J, Kovac A, Ashby S, Cock H, Coxon A, Dickson JM, Fearon A, Fuller A, Kinney M, Mayne A, McLaughlan T, Mitchell JW, Pardington R, Pullen A, Shankar R, Solomon J, Tittensor P, Wright S, Yandle A, Zuberi S, Cowan K, Thomas RH
Publication type: Article
Publication status: Published
Journal: Seizure
Year: 2025
Volume: 125
Pages: 152-161
Print publication date: 01/02/2025
Online publication date: 14/12/2024
Acceptance date: 07/12/2024
Date deposited: 04/02/2025
ISSN (print): 1059-1311
ISSN (electronic): 1532-2688
Publisher: W.B. Saunders Ltd
URL: https://doi.org/10.1016/j.seizure.2024.12.008
DOI: 10.1016/j.seizure.2024.12.008
Data Access Statement: The 25 research uncertainties taken to the final workshop, engagement summary, question verification form and data management spread sheet are available to view on the James Lind Alliance website at the following address: https://www.jla.nihr.ac.uk/priority-setting-partnerships/epilepsy/
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