Almost every aspect of a person’s epilepsy has been shaped in one way or another by research. From diagnosis to treatment and care, research is constantly trying to prevent epilepsy from interrupting lives.
But it works both ways: If the research aims to change the experience of people with epilepsy, it is fitting that they have a say in what research is done and how. In doing so, they bring valuable expertise acquired from their lived experience of epilepsy, in addition to the academic and medical expertise of the researchers.
As Rebecca says, her own experience with epilepsy and the side effects of treatment “gives you the knowledge and coping strategies that can inform and shape research. You are an expert on your own epilepsy and your voice should be included in shaping research directions and decisions.
Additionally, evidence from other areas of medical research suggests that public and patient participation leads to better studies and results that can benefit people sooner.
So, to accelerate research progress, we need to ensure that all people affected by epilepsy make their voices heard and that the research that matters most to them is a priority. This is why Epilepsy Research UK created the FORM NETWORK.
Launched in October 2020 as part of #ALifeInterrupted campaign, The goal of the SHAPE NETWORK is simple: To create the largest ever community of people with epilepsy to influence and shape future research. This includes families and caregivers as well as people with epilepsy. We plan to involve people in all aspects of research: from prioritizing problems to solve, choosing projects to fund, and working with scientists to influence the design of their studies.
The SHAPE NETWORK started by asking people with epilepsy to share their thoughts on research with us. More than 400 people responded to a questionnaire, providing their invaluable information on how epilepsy interrupted their lives and what they want the research to do. 300 of these respondents agreed to participate in the SHAPE NETWORK and become the founding members of this valuable research community. And those numbers are growing every week.
Drawing on her previous experience of involvement in research, Rebecca successfully applied to be one of 10 members of the SHAPE NETWORK Steering Group. One of the key activities of the steering group so far is the creation of a strategy for research participation – a set of guiding principles and objectives for the network and how people should be involved in it. the research.
Epilepsy Research UK is now working with the SHAPE NETWORK to help us ensure our research meets the needs of people with epilepsy. To decide which research projects our charity will fund, network members will work in parallel with the Scientific Advisory Board, which is chaired by Professor Mike Cousin of the University of Edinburgh. The SHAPE NETWORK will also organize “application clinics” to help shortlisted researchers submit their funding requests to make them the best they can be. Later this month on the research blog, Mike will go into more detail about the network’s involvement in Epilepsy Research UK’s 2021/22 grant cycle.
In addition to influencing individual projects, the SHAPE NETWORK will also play a key role in influencing the broader epilepsy research agenda. Epilepsy Research UK and five other epilepsy charities are working with the James Lind Alliance in a new UK Partnership for Epilepsy Priority Setting (PSP). As the name suggests, the goal of this collaboration is to set priorities for future research, and the SHAPE NETWORK will play a key role in this regard. In a blog post later this month, our CEO, Maxine Smeaton, will discuss how PSP will help us forge new collaborations to deliver treatments earlier and lobby the government for increased spending commitment. publications devoted to epilepsy research.
None of these projects would be possible without the willingness of people with epilepsy to share their experiences. As she explains in her research blog post next week, Rebecca is driven by hope for a better future. “Research is essential for improving the lives of people with epilepsy now, and for those who will develop or be born with the disease in the future,” she says. “I hope for more effective treatments with fewer drug side effects. One third of people still live with uncontrolled epilepsy. I hope this can be significantly reduced.
“Involvement has the capacity to make research relevant, focused and, hopefully, more fruitful in its objectives. “
Keep an eye on the research blog this month for more on Rebecca, Mike and Maxine’s SHAPE NETWORK, and how you can contribute to epilepsy research.
