Simon Privett Epilepsy Awareness Advocate
Bringing the patient voice to research and industry
Experience
Human Brain Project Summit 2023
Started in 2013, HBP is one of the largest research projects in the world . More than 500 scientists and engineers at more than 140 universities, teaching hospitals, and research centres across Europe come together to address one of the most challenging research targets – the human brain. In 2023, Simon was invited to speak at the final annual summit in Marseille to discuss lived experience, and how it relates to using 'digital twins' in epilepsy research.
ICTALS 2019
The ICTALS conference (International Conference on Technology and Analysis for Seizures) gathers scientists and clinicians around one common goal: use quantitative methods to analyze seizures and better understand and treat the disorder. In 2019, Simon was invited to speak to clinicians and researchers to bring the lived experience perspective and to remind those working on research who they are working for.
Education
With years of experience delivering talks around the lived experiences of chronic health conditions, especially epilepsy with multiple co-morbid conditions, Simon is able to deliver engaging, thought provoking talks which fit with the academic syllabus of the students; from student nurses, to pharmacy students and beyond.
Working with Industry
Following collaborations with several bio-tech companies on technology aimed to support people with epilepsy, Simon is well versed in bringing a balanced view to product development. Simon has a good insight into the needs of the epilepsy community, but also a firm understanding of the needs of both industry and clinicians also, and works to bring those stakeholder objectives together to guide industry leaders.
SMQB
Following years of collaboration, Simon is a trusted advisor to the SMQB (Systems Modelling and Quantitative Biomedicine) department at University of Birmingham, sitting on the steering committee as well as advising for projects looking at mathematical modelling strategies for diagnosing, treating and monitoring of epilepsy.
University of Exeter, Academy of Nursing
Since 2019 Simon has served as an advisor on the Public and Patient Advisory Board for the Academy of Nursing's Masters in Nursing course. With a history of multiple health conditions, Simon believes in the aim to provide excellence in Nurse education, bringing his experiences to the students wherever he can.
