A new pioneering digital app is set to transform the lives of thousands of young epilepsy sufferers across the UK
We’re delighted to announce new SBRI funding* and a partnership with the Young Epilepsy Charity to expand the reach of the Digital Health Passport.
Following the successful launch of the 'Digital Health Passport for Asthma' across ten Integrated Care Boards, the team will now be working to develop support for people with epilepsy and learning disabilities. The product will be first launched in Greater Manchester and be available to commission from the summer.
This announcement coincides with Purple Day (Tuesday 26th March) - an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. Each year people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.
The new digital service could transform the lives of thousands of young epilepsy sufferers and their families across the UK.
Tiny Medical Apps (TMA), which specialises in creating digitally enabled self-management programmes to the NHS for young people with asthma, has spent the past eight years developing the Digital Health Passport - an evidence-based mobile app, which improves skills, knowledge and confidence to manage long-term conditions.
It has now joined forces with leading national charity Young Epilepsy, and the Caribbean and African Health Network (CAHN) to develop inclusive technology that tackles health inequalities and to transform epilepsy care for children, young people, and their families, with a special focus on individuals with learning disabilities and autism.
Epilepsy can be a frightening and isolating experience, especially for children, with 40% of emergency admissions amongst learning disabilities. Latest figures also show that people from ethnic minorities who have learning disabilities have a 28-year reduced life expectancy compared to their white counterparts.
The Digital Health Passport app for Epilepsy will be designed to empower patients and clinicians alike. It will include evidence-based features such as medication reordering, reminders and tracking to improve adherence, symptom and seizure tracking for better clinical insights, and trigger avoidance tools (e.g. sleep support, hot weather alerts, period tracking) to reduce seizures.
Additionally, it will offer voice control and real-time support options, connecting patients to the right care at the right time, including established peer support networks and charity helplines. The integration of ‘wearables’ and benefits of AI language model support will be explored.
It will build on Young Epilepsy's existing work with the Patient Knows Best system, ensuring clinicians can access and act on patient data, and that patients and their carers have access to up-to-date care plans. The data will be in standard formats that can assist large scale research projects improving understanding and treatment options over time.
Dr Greg Burch, Joint CEO & Clinical Director, Tiny Medical Apps said:
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“This project represents a significant stride towards personalised healthcare solutions, ensuring that young people with epilepsy and their carers have the tools they need for informed decision-making and improved self-management. We’re delighted to join forces with Young Epilepsy and the Caribbean and African Health Network (CAHN) to assist even more young people with long term conditions, helping improve self management for those with epilepsy."
Mark Devlin, Chief Executive, Young Epilepsy, said:
“We’re thrilled that our joint funding proposal with Tiny Medical Apps to develop the Digital Health Passport was successful. Young people and their families have expressed to us how transformative this tool will be, providing them with seamless access to their health data when they need it most. We believe the Digital Health Passport can improve the lives of children and young people by enabling them to navigate their healthcare journey with greater ease and self-confidence."
Rev. Charles Kwaku-Odoi, representing the Caribbean and African Health Network, expressed his enthusiasm for the project:
"The collaboration between CAHN, Tiny Medical Apps, and Young Epilepsy is a testament to the power of partnerships. We believe that the Digital Health Passport for epilepsy will revolutionise the way individuals manage their health, fostering inclusivity and accessibility for all."
Nathaniel Mills, Programme Manager at NIHR Children and Young People MedTech, said:
”This groundbreaking technology has the potential to transform the lives of children and young people with epilepsy, as well as those with mild to moderate learning disabilities, by providing them with smarter, more accessible support. We are proud to continue our partnership with TMA by being a part of this exciting project and look forward to seeing the positive impact it will have on the lives of children and young people.”
In collaboration with NIHR Children and Young People MedTech Co-operative**, the Digital Health Passport aims to address the specific needs of children and young people. With a focus on improving the quality of care for those with epilepsy, this project aligns with the broader goal of enhancing health outcomes and fostering a sense of independence among the younger population.
Tiny Medical Apps, has spent nearly a decade developing healthcare solutions within the NHS, and is already providing services to ten Integrated Care Boards. Its existing collaborations include supporting young people with asthma in the Greater Manchester ICB region, where it will now co-design digital solutions for those with epilepsy.
Please get in touch for more information about our services and the impact of our work so far.
*This work was commissioned and funded by SBRI Healthcare. SBRI Healthcare is an Accelerated Access Collaborative (AAC) initiative from NHS England, in partnership with the Health Innovation Network.
**From April 2024, NIHR CYP MedTech will become NIHR HealthTech Research Centre in Paediatrics and Child Health.