Back in 2018 Epilepsy Research UK took a long hard look at itself and concluded there was more we could do for research into epilepsy than simply funding it. We were realistic about the scale of our ambition, but identified opportunities to support our funded researchers through capacity-building activities and enabling them to secure follow-on funding.
Now, don’t get me wrong – the investment we make in research and researchers is key to developing life changing innovations for people with epilepsy and we have seed-funded some incredible research and promising researchers. At a recent event, Associate Professor Gabriele Lignani shared a slide that perfectly illustrates this point. Dr Lignani, was awarded an Emerging Leading Fellowship in 2017 and has since secured an additional £9 million in follow-on funding and obtained a tenured Professorial role at UCL. With this backing, Dr Lignani has translated his gene therapy in three patients (so far) and cofounded a spinout company. There is no denying, funding this Fellowship has delivered an incredible return on investment.
But back to our strategy. In 2019 we set about reaffirming our values and promised our fellow epilepsy charities that we would ‘stay in our lane’ by focusing solely on research. We developed a funder-plus model to offer greater support and opportunities to our funded researchers. This approach became a more strategic capacity-building programme, as outlined in our ‘Going Further’ strategy.
Along the way, there have been some key building blocks that have enabled us to reach this point as we transition to becoming the Epilepsy Research Institute.
The first step on our journey was to highlight the shocking inequalities in epilepsy research funding. We released the ‘#ALifeInterrupted – Shaping the Future of Research into Epilepsy’ report and campaign to raise awareness that epilepsy research funding is disproportionately less than other neurological conditions, receiving just 7% of available neurological research funding. We also wanted to speak directly to people affected by epilepsy and made two powerful films, ‘Doug’ and ‘Ava’, to let the community know… well, we get it! And we reminded the community that innovations in treating and preventing epilepsy can only be achieved through research.
Our campaign ask was for people affected by epilepsy to become involved in research by joining our Shape Network. The network has subsequently become the largest epilepsy PPIE group, with over 350 prepared and educated research advocates in the UK. Members are now actively involved in our research assessment work and partnering on research programmes.
Our ‘Going Further’ plan outlined our commitment to taking a strategic, systematic and long-term approach to building the capacity of epilepsy researchers in the UK. First, we wanted to understand what areas of research the epilepsy community identified as most important. We partnered with the fantastic team at the James Lind Alliance (JLA) and National Institute for Health and Care Research (NIHR) to undertake the UK Epilepsy PSP to identify the top ten research priorities for epilepsy. The programme took roughly 18 months to complete and used the JLA’s rigorous methodology. We received around five and a half thousand research priorities which were then painstakingly summarised, grouped and categorised into distinct research questions. Alongside the Epilepsy Research UK community, our epilepsy charity partners played a hugely important role in sharing the survey with healthcare professionals, people affected by epilepsy and patient groups to establish what is now a recognised national consensus. We know the top 10 priorities will provide researchers with the evidence that their research is a priority for people affected by epilepsy. This will ultimately lead to increased investment.
Whilst developing the research priorities, we were acutely aware that compared to other disease areas there are enormous gaps in the capacity and capability of the epilepsy research ecosystem. We know that research cannot flourish without the right level of investment and the right infrastructure that attracts and retains the best researchers to epilepsy. We aspired to be in a position to foster an ambitious and inclusive culture of collaboration for everyone working in epilepsy, not just ERUK-funded researchers.
The next step, therefore, was to develop a programme of work aimed at driving large-scale investment into epilepsy research. We wanted to bring everyone together – the epilepsy research community, epilepsy patient groups, industry, institutional funders and policymakers to radically advance research into epilepsy. #Every1EndingEpilepsy is this programme.
We are now 9 months into the programme. We have recruited a research steering group comprising around 30 researchers representing 16 HEIs throughout the UK. We have held a series of scoping workshops and agreed a thematic approach that incorporates the PSP priorities. We have identified cross-cutting enablers such as technologies and methodologies and have begun to shape a roadmap that will enable us to champion the need for strategic investment – and part of that will be a public-facing campaign supported by people affected by epilepsy.
As we were developing the model for #Every1EndingEpilepsy, it became clear that there needed to be a delivery mechanism for the research programme. Somewhere that held the research themes and priorities. Somewhere that time and resources could be committed to maintain momentum and further develop the opportunities. Somewhere, crucially, that was accessible to everyone working in epilepsy, where all stakeholders could be actively engaged and feel a sense of ownership.
The term ‘Institute’ is controlled by the government, and only available to those with a track record of significant success in their field and who operate nationally at the very highest levels. Epilepsy Research UK had the credentials – a clear record of funding high-quality research and undertaking capacity-building activities that support the development of the UK epilepsy research ecosystem. We made an application to the government, supported by key epilepsy research stakeholders, senior academics, clinicians, charity partners and membership organisations. We received permission in March 2023.
Becoming the ‘Epilepsy Research Institute UK’ will provide us with the unique capability to convene and coordinate the research community. The Institute will be the enabler, the connector, and the hub. The Institute will unite everyone in a common purpose to radically advance epilepsy research.
Across all the major building blocks of our strategy, strong partnerships and collaborations have been at the centre of everything we do. But these relationships don’t happen overnight, and they require gives and gains on both sides. Our aim as the Institute will be to lead a culture of collaboration because as the Minister, George Freeman says in his statement supporting the Institute “It is clear that progress will not be achieved by some extraordinary discovery one afternoon in a laboratory, but by incremental aggregation of different disciplines and multidisciplinary working partnerships”.
So, let’s get to work!
