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Involve the Shape Network in your research

Support to engage, recruit and involve people with epilepsy in research

We want people from all backgrounds with a lived experience of epilepsy to have opportunities to learn about research, participate in studies, and help shape the research that matters most to them.

People affected by epilepsy also bring unique insights that can improve the quality, relevance and impact of research. That’s why the Epilepsy Research Institute is committed to supporting and guiding researchers and industry representatives to involve people affected by epilepsy in meaningful and effective ways.

Through our Shape Network, we have built the UK’s largest network of research-interested people affected by epilepsy. Our Patient Public Involvement and Engagement (PPIE) group is made up of over 800 people living with epilepsy, their families and carers.

What is PPIE and How Can We Help?

Public engagement is where information and knowledge about research is shared, for example, people with epilepsy attending an open day or research seminar.

How can the Epilepsy Research Institute help with engagement?

  • Please talk to us about your research results and your plans for sharing your findings. We’d be happy to discuss how we can support your dissemination, for example through blogs, videos, and events.
  • We can also promote existing communications and events with our Shape Network members through our regular newsletters. .

PPI can improve your engagement strategy. Our Shape Network members can help with your dissemination plans and communications.

Participation refers to people being recruited to take part in a research study as participants, for example, people with epilepsy joining a clinical trial.

How can the Epilepsy Research Institute help with participation?

  • We can advertise opportunities for people with epilepsy to participate in research through our Shape Network and on other channels, such as social media.
  • PPI can improve your recruitment strategy. Involving people affected by epilepsy in developing and reviewing the information you will use to attract, recruit and explain your project to participants will be key to finding and keeping people onboard.

Patient and public involvement and engagement (PPIE) is when people affected by epilepsy are active partners in research. For example, people with epilepsy are involved in prioritising research questions, designing studies, improving participant experience and sharing results effectively.

Good practice is to ‘do with’ and work in partnership. For example, asking people to review plans is important, but better still, you might work jointly and produce shared plans and objectives from the outset.

How can the Epilepsy Research Institute help with involvement?

  • We can help you plan meaningful PPI activities, promote your opportunities and connect you with members of our Shape Network who are interested in getting involved.

If you would like to work with the Shape Network, please email the team at [email protected]

People affected by epilepsy also bring unique insights that can improve the quality, relevance and impact of research. That’s why the Epilepsy Research Institute is committed to supporting and guiding researchers and industry representatives to involve people affected by epilepsy in meaningful and effective ways.

Through our Shape Network, we have built the UK’s largest network of research-interested people affected by epilepsy. Our Patient Public Involvement and Engagement (PPIE) group is made up of over 800 people living with epilepsy, their families and carers.

To discuss working with the Epilepsy Research Institute and Shape Network, please contact us at [email protected].

If you’re affected by epilepsy and interested in getting involved in research, find out more about the Shape Network and sign up on this page.

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