A project funded by the Engineering and Physical Sciences Research Council (EPSRC) is developing a wearable device to forecast epileptic seizures.
The project team includes researchers from the universities of Bristol, Birmingham and Ulster, working with the Royal Wolverhampton NHS trust and University of Exeter spin-out Neuronostics.
The project was launched after the unpredictability of epilepsy-related seizures was identified by an NHS priority-setting partnership of individuals with lived experience, carers and clinicians.
The team includes clinicians and machine learning and human-computer interface experts. They realised from the start that involving individuals living with epilepsy, carers and clinicians throughout the development and testing of the wearable device, was a priority.
Principal investigator Dr Amberly Brigden, a senior lecturer at the University of Bristol School of Engineering Mathematics and Technology, said:
You can’t just design the technology and parachute it in. It has to be designed with the user in mind, otherwise it will not meet their needs.
Workshops brought feedback on development at each step
A workshop. Credit: Dr Amberly Brigden
The researchers met with individuals living with epilepsy, carers and clinicians to look at issues such as the visual appearance and complexity of seizure forecasts and the portrayal of seizure risk.
They also discussed the functionality of the app, including whether they wanted it to have care plans, alerts for carers and other epilepsy self-management functions that would be beneficial.
The team ran a series of workshops as the development progressed and were able, over time, to develop more specific prototypes informed from the feedback.
Input from lived experience overcame doubts of clinicians
The technology is a combination of a wearable device and an app in which users record data about their epilepsy and seizure events.
Dr Brigden added:
Epilepsy is often associated with memory problems and cognitive issues, which can make it a challenge to enter data. We learned early on that what individuals wanted was to be able to invite someone, a partner or carer, to be able to download and share the app and enter data alongside them.
A speaker at the workshop. Credit: Dr Amberly Brigden
Clinicians raised concerns about unintended consequences from the app when it warned individuals about the high risk of a seizure.
However, consultations with individuals with lived experience of epilepsy revealed they wanted to know the risks and they were comfortable with this knowledge.
Recruiting a diverse group was a challenge
The researchers have won further funding from EPSRC to develop a minimal viable product. They will use the same network of individuals and follow the same process of step-by-step development with feedback from the group.
Establishing the patient and public involvement group was not without its challenges. An initial advertisement led to responses from mainly white women. The researchers worked with a charity that was able to attract some men through its social media channels. However, the group still lacked representation from those facing the greatest health inequalities, including people of ethnic diversity.
The team eventually partnered with Bristol-based Caafi Health, an organisation that supports underserved communities in accessing health and care services. This collaboration enabled the team to gain ongoing feedback from a more diverse community.
Patient and public involvement fundamental to research
Dr Brigden added:
My advice to other researchers would be to think about how you are going to resource your patient and public involvement when you are making your funding application.
It would be great, for example, to have a patient and public involvement lead in your team, someone dedicated to building those links and running the workshops. That could be someone with lived experience working as a co-applicant.
Patient and public involvement has been fundamental for us and we remain committed to it as part of improving and adapting our technology and ensuring it is as effective and user-friendly as possible.