National digital record for children and young people with epilepsy to launch

A digital platform for children and young people with epilepsy is to go live in December 2021, through a partnership with the Young Epilepsy Charity and health tech supplier Patients Know Best (PKB).

The organisations have partnered to deliver a national solution which can support children and young people with epilepsy, and their families, to manage their health and wellbeing digitally.

Following an engagement programme, the partnership aims to tailor the PKB solution to enable users to collect and understand their health data, as well helping to share data with their clinicians. The tool will also help to support self-management, and will include seizure diaries, measurements and symptom tracker functionality – as well as a clear way to present this data.

The aim for the platform is also to support users to identify trends in the circumstances that surround their symptoms, for example, tracking sleeping patterns and rest periods.

Following the launch, the programme then aims to expand to provide a version of the platform to support researchers.

Mark Devlin, Chief Executive, Young Epilepsy, said: “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.

“At Young Epilepsy we want to revolutionise the healthcare of children and young people with the condition and we are looking forward to working with Patients Know Best on developing cutting edge technology to ease some of the challenges faced by children and their families living with epilepsy.”

Mohammad Al-Ubaydli, Chief Executive and Founder of Patients Know Best, added: “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.”