Despite being one of the most prevalent serious neurological conditions, there are significant inequalities in research funding for epilepsy in comparison to other neurological conditions. Epilepsy received just 0.3% of the £4.8 billion UK government funding spent on health-related research in 2018. To increase investment, we needed to do as other health conditions had done and provide clearly evidenced priorities. Funded and led by Epilepsy Research UK, the UK Epilepsy PSP was a once-in-a-generation national consensus that collated and ranked the research priorities of the UK’s epilepsy community – people with epilepsy, their families, friends and carers, those bereaved by epilepsy and clinicians and health and social care professionals – to identify the Top Ten priorities for research into epilepsy.
We collaborated closely with other major UK epilepsy charities – Epilepsy Action, Young Epilepsy, SUDEP Action, Epilepsy Society and the International League Against Epilepsy (ILAE) – and engaged with over 100 partner organisations, including rare disease and associated condition charities and clinical membership associations. Throughout, the epilepsy community championed this partnership, which followed the rigorous James Lind Alliance (JLA) priority setting process. Katherine Cowan, senior advisor to the JLA, spoke more about this process in her research blog last week.
Initially, 23 individuals from across the UK with varied professional and personal experience of epilepsy formed the UK Epilepsy PSP Steering Group. Research priorities were then gathered from the epilepsy community through an initial survey which received a phenomenal 2,014 responses from across the UK, resulting in over 5,400 priorities. These priorities covered a wide range of themes, including sudden unexpected death in epilepsy (SUDEP), surgery and seizure triggers. People with epilepsy were the most prominent voice, making up almost 50% of all responses.. We received responses from individuals of diverse backgrounds and from hard-to-reach groups, with respondents largely representative of the UK population.
A meticulous process of reviewing the 5,400-plus priorities then took place, and every priority was reviewed and categorised by a member of the Epilepsy Research UK PSP team and informed the drafting of 110 research summary questions. We then determined which of these questions had been answered, partially answered or unanswered by the existing research literature.
57 of the 110 summary research questions were moved forward for prioritisation in the second, shortlisting survey, which received 2,798 responses. As before, the most prominent voice in the survey were people with epilepsy, who made up almost 55% of all responses (Figure 1).
Figure 1: Shortlisting Survey Demographics for responses to Q1: Which of the following best describes you? (required and restricted to one option per response)
From the responses, 25 questions were then shortlisted for discussion at the UK Epilepsy PSP Workshop: a whole-day event involving people affected by and working in epilepsy. By the end of the day, the Top Ten priorities for research had been agreed by the group, as well as the ranking for priorities 11 to 25, which included topics like surgery and sleep.
The inclusivity, scale and diversity of epilepsy community’s phenomenal engagement throughout this priority setting partnership reflects their desire to be heard, treated equally and drive change for research into epilepsy.
Coordinating this project has been a privilege. The engagement of the epilepsy community and their trust in this process, as well as the insight gained, has exceeded all expectations. At the UK Epilepsy PSP Workshop, I was fortunate enough to witness the prioritised research questions being brought to life by the insights of those attending, who were generous with both their time and experience. Now, as we disseminate the Top Ten priorities, it’s been a pleasure to speak with those who contributed to this project, to hear their support and enthusiasm for the future of epilepsy research. This project would not have been possible without YOU.
Having launched the Top Ten priorities for research into epilepsy in October last year, the most important stage is now underway: disseminating the priorities with the UK and international epilepsy community and translating them into action. Working in partnership with our collaborators, we are now organising a series of task force groups, involving people affected by, working in and researching epilepsy. These groups will unpack each of the Top Ten priorities, identifying what we know, what we don’t know yet, and how these questions will inform the research we fund. This work will ensure the Top Ten priorities, as decided by the UK’s epilepsy community, are addressed.
The UK Epilepsy PSP and its Top Ten will provide the evidence needed to influence government and institutional funders to invest more in epilepsy research. Moreover, and most importantly, the outputs from this study will benefit people living with epilepsy. They will provide the evidence of need and priorities to support research development, shaping the research agenda for the next generation and driving change for research into epilepsy.
