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The SHAPE NETWORK – providing expertise from experience



Date Published: October 5, 2021

Author: James Matejka

One year ago, we created the SHAPE NETWORK – the largest ever community of people affected by epilepsy dedicated to influencing research into the condition. On the Research Blog this month, we look at why research needs people with epilepsy to get involved, and the difference the network will make.

Rebecca has been living with drug-resistant focal epilepsy for 30 years. Over the last eight years, she’s been involved in research in different ways. “As someone living with epilepsy, I feel it’s a way of turning a negative into a positive – taking my years of lived knowledge and experience into forward motion.”

Almost every aspect of a person’s experience of epilepsy has been shaped in some way by research. From diagnosis to treatment and care, research is constantly trying to stop epilepsy interrupting lives.

But it works both ways: if research aims to change the experience of people affected by epilepsy, it’s only right that they get to have a say in what research gets carried out and how. By doing so, they’re contributing valuable expertise gained from their lived experience of epilepsy, complementing the academic and medical expertise of the researchers.

As Rebecca puts it, her own experience of epilepsy and the side effects of treatments “give you the knowledge and coping strategies that can inform and shape research. You’re an expert in your own epilepsy and your voice should be included in shaping research directions and decisions.”

What’s more, evidence from other areas of medical research suggests that involving the public and patients leads to better quality studies and results which can benefit people sooner.

So, to accelerate further progress in research, we need to make sure that everyone affected by epilepsy has their voice heard, and that the research that matters most to them is prioritised. That’s why Epilepsy Research UK created the SHAPE NETWORK.

Launched in October 2020 as part of #ALifeInterrupted campaign, the aim of the SHAPE NETWORK is simple: to build the largest ever community of people affected by epilepsy to influence and shape future research. This includes families and carers as well as people with epilepsy. We plan to involve people in all aspects of research: from prioritising the problems that need solving, to deciding which projects receive funding, and working with scientists to influence the design of their studies.

The SHAPE NETWORK began by asking people affected by epilepsy to share with us their thoughts on research. More than 400 people responded to a questionnaire, providing their valuable insights into how epilepsy has interrupted their life, and what they want research to achieve. 300 of these respondents agreed to take part in the SHAPE NETWORK, and become the founding members of this valuable research community. And these numbers are growing every week.

With her previous experience of getting involved in research, Rebecca successfully applied to be one of the 10 members of the Steering Group for the SHAPE NETWORK. One of the key activities of the Steering Group so far is creating a strategy for research involvement – a guiding set of principles and goals for the network and how people should be involved in research.

Epilepsy Research UK is now working with the SHAPE NETWORK to help us make sure our research meets the needs of people with epilepsy. To decide which research projects our charity will fund, network members will work in parallel to the Scientific Advisory Committee, which is chaired by Professor Mike Cousin from the University of Edinburgh. The SHAPE NETWORK will also be running ‘application clinics’ to help shortlisted researchers with their funding applications to make them the best they can be. Later this month on the Research Blog, Mike will explain more about the involvement of the network in Epilepsy Research UK’s 2021/22 grant round.

As well as influencing individual projects, the SHAPE NETWORK will also play a key part in influencing the wider epilepsy research agenda. Epilepsy Research UK and five other epilepsy charities are working with the James Lind Alliance in a new UK Epilepsy Priority Setting Partnership (PSP). As the name suggests, the aim of this collaboration is to set the priorities for future research, and the SHAPE NETWORK will have a key role in this. In a blog post later this month, our Chief Executive Maxine Smeaton will explain how the PSP will help us forge new collaborations to bring forward treatments sooner, and lobby government for an increased commitment to public spending on epilepsy research.

None of these projects would be possible without the willingness of people affected by epilepsy to share their experiences. As she explains in her post on the Research Blog next week, Rebecca is motivated by a hope for a brighter future. “Research is central to improving the lives of people living with epilepsy now, and for those who will either develop or be born with the condition in the future,” she says. “I hope for more effective treatments with less side medication side effects. A third of people still live with uncontrolled epilepsy. I would hope this can be markedly reduced.

“Involvement has the ability to make research relevant, focused and hopefully more successful in its aims.”

Keep an eye on the Research Blog this month to hear more about the SHAPE NETWORK from Rebecca, Mike, and Maxine, and how you can contribute towards research into epilepsy.

Read more about the SHAPE NETWORK