Join the Beta Testing Phase!
Here at Young Epilepsy, we're always striving to enhance the lives of children and young people living with epilepsy. In 2022, we embarked on a national qualitative research project to gain deeper insights into how families manage epilepsy-related information. The findings were encouraging. Every family had their unique methods, but what they lacked was a centralised, secure platform to streamline their epilepsy health data.
That's why we're thrilled to tell you all about My Epilepsy, a digital tool we have created in collaboration with Patients Know Best (PKB). My Epilepsy is a dedicated area within the NHS Personal Health Record, which is designed to be that single, secure place where families can easily record and access their epilepsy health information. It's a game-changer in epilepsy care, offering real-time data sharing with healthcare professionals, family members, and caregivers, anytime, anywhere.
But before My Epilepsy hits the mainstream, we need your help to fine-tune it. We're inviting you to join our exclusive beta testing phase starting from August 2023 onwards. As one of the first 100 users, you'll have the opportunity to use My Epilepsy in your day-to-day life for 5-6 months, providing invaluable feedback along the way.
Confidence in my seizure management, being able to take control and be responsible with the option of sharing to family. Appointment and symptom tracker so I don’t freeze when they ask me because I easily track it.Young person, pilot participant
Why participate?
Not only will you be instrumental in shaping the future of epilepsy care, but you'll also benefit from a platform designed to seamlessly integrate into your life. My Epilepsy isn't just about tracking seizures and medications; it's about empowering you to take control of your health journey effortlessly.
You'll get the opportunity to track your seizures, medication, and general well-being, providing feedback every 6 weeks. Your input will directly influence the platform's development, ensuring it meets the diverse needs of the epilepsy community. And don't worry, your data is safe and secure within the NHS integrated cloud system.
We understand that life with epilepsy can be challenging, which is why we've made the feedback process simple and convenient. Short evaluation questionnaires, regular check-in points, and a supportive community await you. Together, we'll make My Epilepsy the best it can be.
Are you ready to make a difference? Join us on this exciting journey towards revolutionising epilepsy care. Your involvement could help thousands of children and young people across the UK lead fuller, healthier lives.
Apply now to be part of the My Epilepsy journey and let's make epilepsy management easier, together.
For more information and to apply:
