Young Epilepsy Charity and Patients Know Best partner up
Young Epilepsy and Patients Know Best (PKB) have partnered to deliver a national digital solution for children and young people with epilepsy (CYPE) and their families to manage their health and wellbeing, hoping to go live in December 2021.
The Young Epilepsy team will ensure that development is driven by the voices of children, young people and their families, with a significant engagement exercise to be completed between December and February. The project aims to develop and tailor PKB’s personal health record (PHR) web-based application, to ensure it is easily accessible to children, young people and families from a broad range of backgrounds, can integrate with their ‘digital lives’ and meet their expectations of the digital potential. The project looks to ensure that users can easily collect and make sense of their health data, as well as being able to improve their health care through sharing data with increased integrity with their clinicians.
The programme supported by the new platform will allow greater accessibility to children, young people and parents/carers across the UK. Through this, the partnership aims to tailor the product to support more people, in turn improving health care and efficiency of the NHS. As the UK’s leading children’s epilepsy charity and an NHS business partner, Young Epilepsy are able to provide national coverage and a wide demographic to further increase the impact, effectiveness and longevity of the product.
The new tool will support self-management by providing seizure diaries, measurements and symptom tracker functionality and clear representation of this data. This will allow users to identify trends in the circumstances that surround their symptoms, such as not enough sleep/rest supporting them to make lifestyle adjustments to help their self-management. It will also allow users to share rich data in a timely fashion with anyone they choose, so that clinicians can tailor their support to give the best care.
Mark Devlin, Young Epilepsy Chief Executive explained: “Children and young people with epilepsy and their families have long expressed the need for a digital solution to allow them to better manage their health and well-being and easily share health data with professionals.
“The sad reality is that currently many young people with the condition have to manually record data about their seizures on paper or on local digital files which are patchy, unsecure and inaccurate. Parents attempt to keep records of their child and struggle to reconcile with separate notes written by the school, visiting nurses and GP practices. This means that the inaccuracy of data makes it harder for clinicians to recommend timely medication and treatment interventions.
Young Epilepsy and PKB also have plans over the next year to provide a version of the platform that can be used in a research context to deliver improvements in data collection, with the aim of offering other projects the opportunity to use the product, following its development.
Mohammad Al-Ubaydli, Chief Executive and Founder of Patients Know Best further explained: “The role that charities, like Young Epilepsy, play in supporting individuals and their families with new diagnosis and ongoing condition management cannot be understated. We are so pleased to be able to support Young Epilepsy on their mission to improve the lives and experiences of Children and Young People and their families and carers through our digital platform.
We hope that through this partnership, we can further strengthen the positive impact that charities can play and create a national standard and model that can be expanded on by others across diseases and conditions.”
Between Patients know Best and Young Epilepsy, we hope to improve the experience for all involved in the management and support of children and young people with epilepsy.