This month on the #ERUKResearchBlog, we’ll be focussing on the importance of involving people with lived experience in the development of research. This is often referred to as Patient and Public Involvement (PPI) and we’ll be looking at how it can help shape research and have a positive impact on those affected by epilepsy. But what is PPI? And why do we need more of it in epilepsy research?

The National Institute for Health Research (NIHR) defines Patient and Public Involvement in research as research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Through giving patients, potential patients, and carers – all with lived experience of a condition – an active role in research, we can ensure their voices are heard and that the research that matters most to them is prioritised.

PPI programmes involving people with epilepsy have been extremely limited. That’s why Epilepsy Research UK launched the SHAPE NETWORK, as part of our #ALifeInterrupted campaign – to build the biggest ever community of people affected by epilepsy to influence and shape future research. We plan to involve people affected by epilepsy in all aspects of research; from identifying and evidencing priorities that will have the greatest impact, to making decisions on the projects we fund, to involvement in study design. This will put people affected by epilepsy at the centre of our approach to research funding.

Despite being one of the most common serious neurological conditions, research into epilepsy receives only 7% of neurological research funding and just 0.3% of the £4.8 billion spent on health-related research. As well as helping us decide on the research we fund, the unified voice of people with epilepsy will be essential in influencing the government, institutional funders and strategic funders to invest more in this chronically underfunded condition.

Having launched this programme in October last year, we have already been astonished by the response to the SHAPE NETWORK.  Akansha Jain, who has been seconded from the University of Edinburgh has been collating and analysing the responses to our SHAPE questionnaire and will be sharing a Research Blog later in the month where she will be reflecting on her time with Epilepsy Research UK and analysis of the responses so far.

But before then, here are some trends we are seeing…

  • The main ways epilepsy has interrupted members’ lives are through career choices, interruptions to daily life, and an impact on sleep and mental health.
  • The main things members said would be life changing include medications with fewer or less severe side effects, being seizure-free, and being able to do day-to-day activities without worrying about seizures.
  • More than 50% of members said they wanted to prioritise research into new and improved treatment options, as well as effective antiepileptic drugs with fewer side effects.

And this is only the beginning. We have great plans for the SHAPE NETWORK in 2021. So, if you’re interested in influencing and shaping the future of epilepsy research, please join us today.

If you’d like to hear more about research involvement and what it entails before you sign up, throughout February PPI experts and people who have participated in PPI groups themselves are taking over the Research Blog.

First, we will hear from Bec Hanley, who is an expert in charity PPI and facilitates the Charities Involvement Research Group. Made up of UK research charities, the group aims to encourage shared learning about research involvement to ensure that PPI is both effective and meaningful. In her Research Blog, Bec will discuss the value of PPI in charity-funded research and its huge potential impact.

Last year, we co-funded a Fellowship Award with autism research charity Autistica to investigate epilepsy in autism. Autistica are leaders in PPI, and later this month on the Research Blog we will be hearing from Bethan Davies from Autistica about their PPI group – the Autistica Network, which aims to bring together autistic people, families, professionals and researchers to do bigger and better research.

Finally, we will share the perspectives of members of the Mental Health Intervention for Children with Epilepsy (MICE) Study PPI group on why being involved in research is important to them. In their blogpost, the group provide some insights into participating in research to help anyone considering getting involved in the SHAPE NETWORK.

Ultimately, we want to build the biggest every community of people affected by epilepsy to influence and shape research. There is strength in numbers, and in the fight against epilepsy, we need to work together. If you would like to play a role in the future of epilepsy research, join our SHAPE NETWORK today.

JOIN THE SHAPE NETWORK

As a member of the SHAPE EPILEPSY RESEARCH NETWORK, we will ask you for your views and feedback on research through questionnaires and focus groups. You will also receive personalised emails about recent epilepsy research relevant to you, as well as upcoming research events and advance notice of opportunities for involvement in research studies. We will create with you a connected and powerful network of people, who together will drive and enable life changing, life saving research into epilepsy. A life free from epilepsy is possible. But only through research.