Coordinating the UK Epilepsy Priority Setting Partnership

The UK Epilepsy Priority Setting Partnership (PSP) was funded and led by Epilepsy Research UK, in collaboration with over 100 partner organisations. In this blog, Anna Norton, Research & Involvement Officer at Epilepsy Research UK, shares her experience as Coordinator of the UK Epilepsy PSP and what this once-in-a-generation, national consensus will mean for the future of research into epilepsy.

What were you doing before you became the UK Epilepsy PSP Coordinator?
I am part of the research team at Epilepsy Research UK, which focuses on how the organisation funds and supports research, how to involve people affected by epilepsy in research, and how to communicate research into epilepsy to our broad range of supporters. I joined the team in September 2021 as Research & Involvement Officer, following a Masters in Neuroscience at the University of Edinburgh. Shortly after starting, we launched the UK Epilepsy Priority Setting Partnership (PSP).

What attracted you to the role?
Everyone in the team was incredibly excited when Epilepsy Research UK decided to fund and lead a James Lind Alliance Priority Setting Partnership in collaboration with UK-wide epilepsy charities and associated condition partner organisations. Research into epilepsy has been chronically underfunded, and we knew that evidenced priorities from the people most affected by epilepsy were needed to drive change and greater investment for epilepsy research. Personally, I was really looking forward to the opportunity and excited to help coordinate such an ambitious project that would shape the research agenda for the next generation through data-driven evidence: the priorities and engagement of the epilepsy and associated condition community.

What were you responsible for as Coordinator?
As the UK Epilepsy PSP Coordinator, I was responsible for the successful completion of each milestone in the priority setting process, from liaising with the Steering Group, partner organisations and collaborating charities, to reading, reviewing and categorising the 5,400-plus priorities and drafting the summary research questions. Guided by the Steering Group, our first task was to define the scope for the UK Epilepsy PSP and design the first survey, which was developed and hosted by Epilepsy Research UK on our website. Our collaborating charities and over 100 partner organisations helped to share the first survey with their supporters and membership, so we broadly engaged with the entire epilepsy and associated community and received 2,014 responses. These responses listed 5,400-plus priorities, which were categorised and collated into numerous distinct summary research questions. These questions were evidence checked to determine whether they were answered, partially answered or unanswered by the existing research literature. Those partially answered or unanswered (i.e., research uncertainties) were prioritised by the UK epilepsy and associated condition community in a shortlisting survey, which was shared by the collaborating charities and partner organisations, receiving a phenomenal total of 2,798 responses. From the 57 research uncertainties identified by the evidence check, 25 were shortlisted for discussion at the UK Epilepsy PSP Workshop, where the final ranking and Top Ten priorities for research into epilepsy were discussed, debated and agreed by a group of 27 individuals who broadly represented the UK epilepsy and associated condition community.

We also worked with two PhD students from the University of Edinburgh – Jack Armstrong and Adam Kovac, who completed professional internships with Epilepsy Research UK. They were integral during the categorisation and evidence checking stages, respectively.

Throughout the 18-month process, we were guided by Katherine Cowan, Senior JLA Adviser. Her advice and experience from previous PSPs was invaluable, and we are so grateful to have had her guide us through each milestone of this important, once-in-a-generation consensus – thank you, Katherine!

What parts of the role have you really enjoyed?
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 lived experience. Now, as we disseminate the Top Ten priorities, it’s been a pleasure to speak with those who contributed to the project, to hear their support and enthusiasm for the future of research into epilepsy. This project would not have been possible without the support of the epilepsy community – thank you for making the UK Epilepsy PSP what it is.

Anything that was particularly challenging?
Categorising the 5,400-plus priorities was the most labour-intensive part of the process. This stage saw Jack and I read and review each priority and allocate them to a primary and secondary category. These grouped priorities then informed the development of numerous summary research questions. Initially, these were in the hundreds. After ‘homework tasks’ involving rounds of review and discussions with the Steering Group, the questions were revised further to a total of 110 distinct summary research questions.

Overall, what have you gained and/or learned from the PSP experience?
Undoubtedly, my biggest learning has been the importance of public and patient involvement (PPI) in research. The meaningful involvement of people affected by and working in epilepsy through the UK Epilepsy PSP and rigorous JLA process has determined the top research priorities for epilepsy.

Importantly, it has laid the groundwork for helping us shape the future research agenda and drive much needed research investment into epilepsy through the national research collaborative #Every1EndingEpilepsy. For me, this process has highlighted the full potential of involvement in research. We’re really excited to now be translating the priorities into action.

What’s next for you?
Since announcing the UK Epilepsy Top Ten priorities for research into epilepsy at the International League Against Epilepsy British Branch Conference in Cardiff in October, we have been spreading the news far and wide, engaging with clinicians, researchers and people affected by epilepsy within the UK and internationally through a series of conference platform presentations and posters. This has included the Young Epilepsy Research Retreat, All Party Parliamentary Group (APPG) on Epilepsy, Manchester Epilepsy Research Network (MERN), British Paediatric Neurology Association (BPNA) Annual Conference and the American Epilepsy Society (AES) Annual Conference, with more to come – including a platform presentation at the International British Neuroscience Association (BNA) Festival of Neuroscience and the Association of British Neurologist (ABN) & Irish Neurological Association (INA) Joint Meeting.

Researchers weren’t involved in the priority setting process, so it’s been essential for us to share the Top Ten and the rigorous underpinning process with the research community. These evidenced priorities are a resource for researchers applying for grant applications, as they highlight why their research is so needed.

Most importantly, we are now working collaboratively with researchers, clinicians, partner organisations and people affected by epilepsy to translate the Top Ten into action.

The top ten PSP priorities are also providing the foundation for developing the research themes in our national epilepsy research collaborative, #Every1EndingEpilepsy, which will demonstrate to institutional funders the ground-breaking impact that further investment in epilepsy research could have for people living with the condition.

What would your advice be to others who might be interested in becoming a JLA PSP Coordinator?

• Work closely with the Steering Group and any partner organisations: their experience and expertise will prove invaluable throughout. We are proud to have collaborated with over 100 partner organisations, and we look forward to our continued collaboration with them as we action the Top Ten.
• Plan ahead: from the beginning, think about how you will publicise and action the Top Ten once they are announced. It’s important to keep the momentum and update your community.
• Always consider the people affected by and working in the condition, who took the time to provide their research priorities and engage with the project. It’s essential that they are visible and heard throughout the priority setting process and beyond, as the Top Ten are announced and actioned.