Bringing seizure care to the community
Help us develop a wearable headset that measures brain activity
We want to make seizure diagnosis faster, simpler and closer to home
Every year, over 100,000 people in the UK experience a suspected seizure. Getting a diagnosis can take time and often involves multiple hospital visits.
Our community electroencephalogram (EEG) project is exploring new ways to help people get answers more quickly, in GP surgeries and at home. This project is being conducted by our expert researchers in
CIDER – Cornwall Intellectual Disability Equitable Research within the University of Plymouth, the University of Birmingham, and the University of Lancashire.
About the project
What we are developing
- A simple wearable headset that measures brain activity (similar to an EEG)
- A mobile app to collect and securely send data
- Community-based testing in GP surgeries and people's homes
Why we are doing this
For many people, getting a clear diagnosis after a suspected seizure can be a long and uncertain process. Existing tests may not always provide clear answers and often require several hospital appointments.
What is PPIE?
Patient and public involvement and engagement (PPIE) is the active partnership between researchers, patients, carers and members of the public to shape, influence and improve research. It helps ensure research reflects the needs, experiences and priorities of those it aims to benefit.
Find out more: Starting out guide – why and how to get involved in research
Our vision
We want to improve quality of life and reduce uncertainty by making testing more accessible and bringing care closer to home.
How the project works
Stage 1: Design
Develop a new wearable EEG headset.
Stage 2: Testing
Test the equipment and mobile app.
Stage 3: Community evaluation
Trial the technology in GP surgeries and home settings.
Stage 4: Future impact
Explore how community EEG services could support seizure care in the future.
Get involved
Registration of interest is now closed. Thank you to everyone who registered. We are no longer accepting new registrations for this group.
Who can be involved?
We have brought together a group of people with different experiences and expertise to help guide the project. The group includes people with experience of seizures, as well as carers, family members and members of the public, all living in the UK.
All members are adults (18 years or older), including carers of children with lived experience of seizures.
What will involvement include?
Group members:
- Share experiences and priorities
- Help design solutions that work in real life
- Provide feedback on project plans and materials
- Tell us what matters most to patients and families
Please note: This is a way to shape research, not a diagnostic or treatment service. We cannot offer medical advice, and involvement will not affect your care or waiting times. If you have concerns about your health, please contact your GP or usual care team.
What to expect
- Time commitment: Involvement typically includes a small number of workshops or meetings each year (about 4–8 sessions), plus occasional feedback requests by email. Members choose the level that suits them.
- Format: Sessions are offered online, with some sessions in person, so members can take part in the way that works best for them.
- Payment and expenses: We follow national guidance on payment for people’s time, and we reimburse reasonable travel costs.
- Support: Guidance is offered before any sessions, and we can make reasonable adjustments, such as for accessibility needs or caring responsibilities.
- No obligation: Taking part is entirely voluntary. Members can step back at any time, without needing to give a reason, and without it affecting anything else.
Want to know more?
If you would like to hear about future involvement opportunities, please contact cft.cider@nhs.net
This work could lead to:
-
HFaster and more accurate diagnoses
-
HFewer hospital visits
-
HCare delivered closer to home
-
HGreater patient involvement in healthcare decisions and self-management
Frequently asked questions
Do I need medical experience to get involved?
No. We welcome people with lived experience, carers, family members, and interested members of the public. No medical or research background is needed.
Will taking part affect my healthcare?
No. Involvement activities are voluntary and separate from your healthcare. We cannot give medical advice – clinical advice should always be sought from your usual care team.
Can carers get involved?
Yes, we encourage carers to get involved.
Does registering mean I'll get to try the headset myself?
Yes, but not as a clinical trial. The People's Panel focuses on shaping the research, and testing the device means providing feedback on how it should be developed further. Later in the project, separate studies will invite people to use the headset in a clinical trial; these will be advertised and recruited for separately.
How much time will this involve?
It varies, but most people take part in a small number of workshops or meetings (about 4–8) each year, with email updates or requests for feedback in between. You can let us know what level of involvement suits you.
Will I be paid or reimbursed for my time and travel?
Yes. We follow NIHR guidance on payment for involvement time, and reasonable travel costs are reimbursed.
Can I stop being involved at any time?
Yes. Taking part is entirely voluntary. You can step back at any point without giving a reason, and this will not affect you in any other way.
Who can take part? Is there an age or location restriction?
You can take part if you are an adult (18 years or more) and you are: someone with lived experience of seizures, a carer, or a member of the public with a friend or family member that had experiences of a seizure. You can also be involved if you are a carer (at least 18 years of age) of a child with lived experience or seizures.
Will my personal information and experiences be kept private?
Yes. Any personal information you share is handled in line with data protection laws. We will always ask before sharing anything you tell us more widely, for example in reports or publications.
Contact the Cornwall Intellectual Disability Equitable Research (CIDER)
CIDER office
Health & Wellbeing Innovation Centre, Treliske, Truro, Cornwall, TR1 3FF
University of Birmingham
University of Lancashire