However, when it comes to the development of research programmes, there is often a disconnect. Communicating a complex research study, particularly one involving lab-based fundamental science, to people living with the condition can be challenging. Equally, sharing the impact of your epilepsy and your opinion on a proposal put forward by a highly regarded researcher can be a daunting prospect.
I have attended many patient and public involvement (PPI) events over the years where I came away feeling they didn’t work – for anyone. Over the last year, we’ve spent time speaking to people in our network to gather feedback about PPI. We’ve learned that people affected by epilepsy can sometimes feel engagement is tokenistic or a tick box exercise. Researchers can feel underprepared responding to questions about personal treatments or navigating the emotions around personal experiences. This can lead to an unsatisfactory experience for both parties and create a barrier to future engagement.
In the last year, we have recruited the largest ever patient network of ‘research interested’ people affected by epilepsy. We set up a steering group to co-design a capacity building service that will offer meaningful involvement in all aspects of research, from identifying and evidencing priorities, to directly influencing the projects Epilepsy Research UK funds. The SHAPE NETWORK will provide expert guidance when designing, implementing and evaluating research, making studies more impactful, more relevant and more cost-effective. To enable this, we will roll out a programme of education and preparation so that SHAPE NETWORK members understand the research process and their role in supporting high-quality studies. For researchers, we will facilitate and guide the engagement with people affected by epilepsy, ensuring that the process is planned appropriately, and the study information is accessible. We will manage the relationship end-to-end to ensure that everyone has a valuable and guided experience. The result will be better quality research proposals that matter the most to people affected by epilepsy.
Of course, connecting people affected by epilepsy with researchers involves so much more than the project-specific activities outlined above. Bringing the epilepsy community together will be pivotal in shaping the future of research, and our SHAPE NETWORK will enable us to deliver on the UK Epilepsy Priority Setting Partnership (PSP) work we are currently funding and leading. In collaboration with the James Lind Alliance, the UK Epilepsy PSP is bringing together clinicians, patient groups, and people affected by epilepsy to identify and prioritise areas of healthcare that can be improved by research. The entire epilepsy community, and those with associated conditions, will be invited to contribute and the evidence we gather will be transformational for research into epilepsy. Without a doubt, this work will lead to greater strategic collaborations, greater investment and ultimately springboard innovations in our understanding of epilepsy and the treatments and care of the condition.
Research into epilepsy is hampered by chronic underfunding. The unified voice of people affected by epilepsy, clinical and basic researchers is an essential tool in influencing government, institutional and strategic funders to invest more. We are stronger together.
Thank you for being part of this powerful community working together to stop epilepsy interrupting lives.
-Maxine Smeaton
