Today, to mark the launch of the Epilepsy Research Institute, we sat down with our Chief Executive, Maxine Smeaton, and asked her to respond to some of the questions we’re being asked about the Institute.
What is the aim of the Epilepsy Research Institute?
Our aim is for the Institute to serve as the central hub for the epilepsy research community. The Institute will be pivotal in helping to develop the UK epilepsy research ecosystem by driving increased research investment, convening, and coordinating national and international collaborations, and strengthening the research infrastructure. The comprehensive research strategy developed by the national research collaborative #Every1EndingEpilepsy will provide the foundation for all we do and, of course, central to this will be a culture of advocating and actioning the research priorities of people affected by epilepsy.
How did the Institute come about?
Over the last five years as Epilepsy Research UK, we invested in capacity-building activities to support the epilepsy research ecosystem. This included bringing the research community together for expert workshops, seminars and networking through to shining a light on the inequalities in research funding with the #ALifeInterrupted campaign. Next came the Shape Network, the largest PPIE community of people affected by epilepsy, who we work with to prepare for involvement and participation in research.
But we knew we needed to provide researchers with evidence of the priorities of people living with and healthcare professionals working in epilepsy. We therefore funded and led the UK Epilepsy Priority Setting Partnership (PSP), which was a national consensus to establish the Top Ten priorities for epilepsy research using the James Lind Alliance methodology (a gold standard industry-recognised approach). As well as providing researchers with an evidence base, which undoubtedly improves their chances of increased funding, this work was also designed to inspire researchers to prioritise research that matters most to the people affected by the condition. A further key outcome from this work was the community’s commitment to working together. We therefore decided it was time to be bold and begin work on developing a national roadmap for epilepsy research.
We know epilepsy research has been held back by insufficient investment and a fragmented research ecosystem. We therefore needed an overarching strategy for epilepsy research to get the attention of policymakers and institutional funders.
We embarked on the Every1EndingEpilepsy programme, bringing together 26 multidisciplinary researchers from 13 higher education institutions across the country to form a research strategy committee. The output from workshops and multiple discussion groups resulted in the framework for a comprehensive epilepsy research strategy.
Of course, to drive, develop and sustain this research programme, the right infrastructure is required. Somewhere resources and support could be committed, and importantly, somewhere other key epilepsy charities could be involved in and influence. We held discussions with key clinicians and scientists, our Members, and the organisations now represented as our Founding Partners. We agreed the delivery mechanism for the research strategy should be an Epilepsy Research Institute and that Epilepsy Research UK was best positioned to take this work forward. We made an application to the government and received approval within a matter of weeks.
Why become an Institute?
The term ‘institute’ is rightly controlled, such that its use is only available to those who operate at the very highest levels and have a track record of significant success in their field. Epilepsy Research UK had world-leading credentials and a clear track record of funding and supporting cutting edge scientific research and for convening and coordinating capacity building activities that support the development of the epilepsy research ecosystem. An application was made to the government, providing a detailed account of our work, supported by leading clinicians and scientists from across the UK, membership organisations and charity partners. The application was reviewed by the Secretary of State for Business and Trade, permission was then granted.
Becoming the ‘Institute’ will provide us with a united voice to influence policymakers and funders and will also make the organisation eligible for UK Research and Innovation (UKRI) funding. An example of where this has been successfully done, is with the UK Dementia Research Institute. The funding would fit with UKRI’s strategic priority (1 of its 5), which is “Securing better health, ageing and wellbeing”. Becoming a research institute will also enable funding applications from UKRI’s research councils, eg Biotechnology and Biological Sciences Research Council (BBSRC) and the Medical Research Council (MRC).
What will happen to Epilepsy Research UK?
Epilepsy Research UK has legally changed its name to the Epilepsy Research Institute UK. Our charity and company numbers remain the same. All projects funded by Epilepsy Research UK now sit within the Institute and all funds associated with the charity stay within the organisation. Our charitable objects, set out in the charity’s Memorandum and Articles, are in line with the activities of the Epilepsy Research Institute, though work will be undertaken later in the year with the Founding Partners to update them.
Who is seed funding the development of ERI?
The Board of Trustees has designated funds from our free cash reserves to seed fund the Institute for a period of up to three years. It is important to add that a plan is already underway to secure venture funding from institutional funders, both locally and internationally.
Will the Institute still fund epilepsy research?
Yes! The grant round opens on Monday (2nd October). As part of our capacity-building commitment, we are funding Emerging Leader Fellowships and Doctoral Training Centres this year. We aim to attract the brightest minds to epilepsy and to secure talented future research leaders.
Will all UK research funding go to the Institute?
No! Our mission is to grow the pot of funding for UK research into epilepsy – not for it to all come to the Institute. Our efforts will be focused on driving and supporting the research strategy, working with the theme leads and task force groups and by providing the infrastructure support to convene and coordinate large, multicentre, multidisciplinary bids. We also want to provide a platform for epilepsy research through policy influencing and funder relationship management.
Who are the Founding Partners are what role will they play?
Our Founding Partners are charities recognised for their significant contribution to epilepsy research, support, education, advocacy or campaigning. These charities operate with an interest across the whole spectrum of the condition, as opposed to specific aspect. Epilepsy Action, Young Epilepsy, Epilepsy Scotland and the ILAE (British Branch) have all played an active role in the initiation of the Institute and will each provide a member to the Board of Directors. The role of each founding partner is key to placing collaborative working at the heart of the governance of the Institute. The founding partners will contribute to the strategic direction of the Institute, and ensure the Institute takes a holistic approach to the experiences of people affected by epilepsy. We are excited to be working together.
Will you work with Industry?
Yes, we plan to engage with all epilepsy stakeholders. We have excellent relationships with pharma and medical device organisations and have been inspired by some of the recent developments we’ve seen with other charities and government programmes such as the Medicines Discovery Catapult.
How did you decide on the research themes?
Through the Every1EndingEpilepsy programme, we brought together 26 multidisciplinary senior researchers and early career researchers, representing 13 higher education institutions from across the UK. We held four workshops, which also included representatives from key epilepsy charities. We analysed the gaps, we reviewed the PSP outcomes, we looked at other successful models, and thought about the partners we would need to be successful. We looked at the potential delivery models; coalitions of the willing, centres of excellence, hub and spoke models but we felt to get started significant resources would be required to set up an infrastructure for development. We had some fantastic creative discussions, challenges and even Shark Tank presentations (Dragon’s Den if you’re not familiar with the American programme!). It was an enlightening experience, and we are excited that the research community who have developed this will now be absorbed into the Institute as theme leads, members of task force groups, members of the Scientific Advisory Board or ambassadors.
Who will be involved in the Institute?
The Institute will bring together all the varied strands of epilepsy research. High-quality research cannot be achieved by a single person in a single lab. Many discoveries require strong collaborations between disciplines including clinicians, neuroscientists, engineers, mathematicians and data scientists. We will develop partnerships and collaborations between academia, the NHS, industry, funders, patient groups and people affected by epilepsy. Our work will extend across the UK and internationally where the best researchers can be brought together in multi-centre collaborative projects. The Institute will be fundamental in helping us develop the UK’s capacity and will have a global impact.
Who are the governing board of the ERI?
The Trustees of Epilepsy Research UK will now become the Trustees of the Epilepsy Research Institute which will include representation from the Founding Partners. In addition, there will be subcommittees with a specific focus on the research strategy, finance and, of course, the Scientific Advisory Committee, who will safeguard the integrity of our grant-making capability.
What will the Institute mean for people with epilepsy?
We know the devastation epilepsy causes people living with the condition. We share the frustrations of the epilepsy community, watching on as game-changing medical advances and breakthroughs are made in other conditions while research into epilepsy is hampered by a lack of funding and attention. This underfunding has impacted every single person living with the condition, from treatments to quality of life. Our vision of a life free from epilepsy can only be achieved by driving strategic investment that will radically advance research into epilepsy. We want to see science deliver for people living with epilepsy.
How will the wider patient organisations be involved?
Through the UK Epilepsy PSP, we developed a fantastic network comprising single-issue epilepsy charities and associated condition organisations. We have kept them informed on a regular basis of the plans for the Institute and they have been nominating a key representative from their organisations to be involved in task force groups as we develop the research programme.
What’s next?
We’re developing the infrastructure. Having recruited our theme leads, we will be embarking on a series of discovery workshops and setting up task force groups. We will be recruiting key individuals to support the Institute’s programme infrastructure to ensure we keep momentum and enable the Theme Leads to be successful. Towards the end of the year, we will publish a roadmap for epilepsy research which will call on the government and institutional funders to invest in research into epilepsy. In early 2024 we will launch an extensive, high-profile, public campaign, led by people personally affected by epilepsy. The campaign will raise awareness of the impact of the condition and the exciting possibilities of research. We will set out our strategy to demonstrate how investment would make a life-changing and life-saving difference to people affected by the condition. We will use the #Every1EndingEpilepsy brand for a campaign to align the entire epilepsy community, people affected, people working in epilepsy, including industry and key political figures. We have seen this work in other conditions. It’s time for epilepsy to secure its equitable share of the £9 billion of research funding Minster George Freeman tells us is available.
If you have any more questions about the Institute, please do not hesitate to contact me at m.smeaton@epilepsy-institute.org.uk
