Vision and Objectives: The Epilepsy in English (EiE) workshops were designed to educate, equip and empower people living with epilepsy to engage and become involved with research and bridge the gap between people with the experience, their caregivers, clinicians and neuroscientists. The workshops built upon the successful EiE blog, started in 2018 by FutureNeuro MSCA fellow Dr Gareth Morris, where researchers explain complex publications in plain English ensuring their accessibility.
The target group for the workshops included patients and families of people with epilepsy, patient advocacy organisations, the FutureNeuro research community and members of the public. Feedback was sought and the following comment is illustrative of typical comments: ‘Gene Therapy sounds fascinating, will definitely make a huge difference in the lives of people with epilepsy. I will get in touch with my local politicians to lobby for more investment in epilepsy research’ Attendee of Gene Therapy workshop
Inputs: We co-designed of a series of four workshops together with Epilepsy Ireland, DCU PPI Ignite and a person living with epilepsy. Epilepsy Ireland facilitated the selection of the most relevant topics by surveying its members in order to maximise relevance to patients. To maximise reach, we launched the workshops at the Epilepsy Ireland National Conference in October 2021. The workshops were delivered by 14 FutureNeuro team members along with 5 members of the clinical care network and three patient advocates. Following best practice in engaged research, the format started with a presentation by a researcher or clinician followed by moderated breakout rooms and a wrap-up Q&A. The workshops were originally planned as in-person events at four national locations where FutureNeuro had researcher presence. Due to COVID-19, we pivoted to an on-line format – while this reached a bigger population, feedback indicated a preference for in-person workshops. FutureNeuro and Epilepsy Ireland secured €42,000 SFI Discover funding to develop the series. This supported the development of an online platform, a series of animations to accompany the workshops and pre-recorded content.
Outputs: The EiE workshops addressed Temporal Lobe Epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP), Gene Therapy and Using Technology for Self-monitoring. Each session reached the maximum capacity of 25 people including people with epilepsy, family carers and engaged public. Dr Morris has a publication in preparation.
Outcomes and Evaluation: Epilepsy Ireland surveyed the participants and gathered input regarding format and topics. The participants highlighted the importance of extended Q&A sessions as they provided the opportunity to ask questions to researchers and clinicians. For researchers, the workshops provided direct input to research questions. We found the collaboration with a NGO (Epilepsy Ireland) particularly beneficial and a format we will apply to workshops in other disease areas.