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Epilepsy collaboration aims to identify key epilepsy research priorities

20th Sep 2021

Epilepsy Research UK has announced the launch of a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to establish the future research priorities for epilepsy. 
The PSP will bring together clinicians, patient groups, and people affected by epilepsy to identify and prioritise areas of healthcare that can be improved by research. Leading UK epilepsy charities SUDEP Action, Epilepsy Action, Young Epilepsy, Epilepsy Society and Epilepsy Research UK will work together to oversee this milestone investigation into the priorities of people living with epilepsy.
The process will reveal the Top 10 research questions for the epilepsy community. This shortlist will highlight areas that are important to those affected (but does not necessarily come up with specific research questions for individual projects to investigate). The Top 10 may include broader areas of interest where patients, carers, health professionals and others with a keen insterest, such as those bereaved by epilepsy, have agreed a need for research exists. Researchers and funders can then prioritise the most meaningful research for those who will benefit most from it.
The scope of the UK Epilepsy PSP will be defined by the health research priorities of people affected by epilepsy:
- Causes: to include prevention and co-morbidities
- Diagnosis: to include access to health services
- Treatments: to include anti-epileptic drugs, surgery, treatment side effects, co-morbidities (including those as a consequence of treatment), and epilepsy that does not respond to treatment
- Clinical management of epilepsy: to include risk of epilepsy-related deaths, service access, neurodevelopment, co-morbidities, social and psychological factors, and emerging areas such as epilepsy in older people
- Dissemination of research breakthroughs to influence epilepsy care, practice and policy: to include medical education and pathways to improved care

Epilepsy Research UK has committed the funds and resources to undertake the programme with a steering committee comprising stakeholders from leading epilepsy charities, clinicians from the four nations and people living with and affected by epilepsy. SUDEP Action are directly involved in this process and will be working with the group to make sure there are opportunities for the voices of those bereaved by epilepsy to be represented as part of the work. 

The last JLA priority setting exercise in this area was undertaken over 12 years ago by Dr Rhys Thomas, Consultant Neurologist and Neuroscientist, with the Wales Epilepsy Research Network. Dr Thomas (who is also a lead researcher on SUDEP Action's Epilepsy Deaths Register, as well as collaborating with the charity on other epilepsy risk research) will lead the steering group for the 2021 initiative.

"A new study is long overdue, the outcomes of which would benefit people living with epilepsy by providing the evidence of need and priorities to support research development. We know that PSPs can lead to increased funding from NIHR, which is so urgently needed for epilepsy, given the shocking inequalities in research funding." Dr Rhys Thomas

"It is great to have the opportunity to work with other epilepsy organisations, and the James Lind Alliance, to better understand what things really are priorities for people living with epilepsy, their families, carers, health professionals, and importantly for us at SUDEP Action, to those who have been suddenly bereaved by epilepsy. Often the voices of the bereaved are left out of research, so this is an exciting chance to hear from the whole epilepsy community on what is important to them - so we can help shape future research together in a way which matters." Sammy Ashby, SUDEP Action Deputy Chief Executive (who is part of the project). 
 

TAKE PART IN THIS PROJECT:

It's important the voices of those bereaved by epilepsy are clear throughout this project. What areas of research do you think need more focus or still have unanswered questions? This could be to do with epilepsy deaths, SUDEP, epilepsy risks & risk communication, the impact of sudden deaths on families, or another aspect of epilepsy/epilepsy bereavement.

Please share your views on what research priorities are important to you by completing this survey: https://epilepsyresearch.org.uk/uk-epilepsy-psp/