The SHAPE NETWORK
Involving people affected by epilepsy in our grant funding decisions

Professor Mike Cousin
Chair of Scientific Advisory Committee

Chair of Neuronal Cell Biology
University of Edinburgh

In this Research Blog, our Scientific Advisory Committee Chair Professor Mike Cousin explains why and how we are involving the SHAPE NETWORK in this year’s grant round to help Epilepsy Research UK decide which research projects to fund.

Every September, Epilepsy Research UK welcomes dozens of preliminary grant applications from researchers across the UK seeking funding for their work, and this year has been no exception. These applications could be the key to breakthroughs in areas such as new epilepsy treatments, accelerating accurate diagnosis, preventing epilepsy related deaths, uncovering the causes of epilepsy or new therapies that may one day help us to prevent epilepsy. Thanks to our dedicated Scientific Advisory Committee (SAC), comprising independent experts in research into epilepsy from around the UK, these preliminary applications are currently being shortlisted ahead of the rigorous assessment process in November.

Why should people with epilepsy be involved in the grant funding process?

Last year, as part of our #ALifeInterrupted campaign, Epilepsy Research UK launched the SHAPE NETWORK, with the aim of building a community of people affected by epilepsy who are interested in being involved in research. There is growing recognition that Patient and Public Involvement (PPI) at an early stage of research leads to higher-quality studies and better outcomes. With this year’s research funding process already underway, we plan to ensure  people affected by epilepsy are central to Epilepsy Research UK’s grant funding decisions, and that’s why we are involving SHAPE NETWORK members throughout our annual grant round.

How will the SHAPE NETWORK be involved?

Firstly, all shortlisted grant round applicants will meet with members of the SHAPE NETWORK to discuss their proposed research and seek feedback on their grant application. This may be to consider how people affected by epilepsy could best be involved in the proposed research, how to make the language explaining the complex underlying science accessible, or how best to communicate the potential impact of this research. The aim of this stage, known as SHAPE NETWORK Application Clinics, is to support shortlisted researchers to produce high impact applications, and will be a mandatory requirement for all applicants.

Once shortlisted applicants submit their full grant applications in January 2022, the proposed projects will undergo a rigorous review process by our SAC and with the help of external peer reviewers (link to AMRC Peer Review Audit news article). Alongside this, a panel of SHAPE NETWORK members with  the appropriate knowledge or experience will use a traffic light system to score pre-agreed criteria such as the quality of the lay summary, the suitability of any PPI component of the study, and how impactful the proposed research could be for people affected by epilepsy. It is important to note that we will not be asking SHAPE NETWORK members to comment on the scientific quality of the research proposed, as this is the role of our expert SAC. Instead, we will ask SHAPE NETWORK members to draw on their personal experiences of epilepsy when assessing applications. By doing so, they will be contributing valuable expertise gained from their lived experience, complementing the research expertise of the SAC.

The involvement of people affected by epilepsy at the key stages in the decision-making pathway will accelerate further progress by ensuring people affected by epilepsy have supported Epilepsy Research UK to fund the best and most impactful research. As SHAPE NETWORK member Rebecca said in last week’s blog, “involvement has the ability to make research relevant, focussed and hopefully more successful in its aims.”

-Professor Mike Cousin

How can I be involved?
If you have been affected by epilepsy and would like to be involved in this grant round, email [email protected] and we will send you a brief application form.

Thank you Mike!

Epilepsy Research UK would like to say a HUGE thank you to Mike who, alongside chairing the SAC, this year took on the additional role of being #TeamERUK Captain for the 2021 London Marathon team.

I was honoured to captain the 2021 London Marathon #TeamERUK fundraising for Epilepsy Research UK. I’ve seen the dedication of the supporters and staff over the years and I thought this was a fantastic opportunity to give something back.

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