This webinar brings together parents, clinicians, researchers and young people to explore how digital tools can support children and young people with long-term conditions — particularly during the critical transition from paediatric to adult services.
Victoria Betton — Welcome & Introduction
Victoria Betton, Director for Digital Data and AI at Health Innovation Kent Surrey Sussex, sets the scene by framing the conversation around the "cliff edge" that many young people with long-term conditions face at the age of 18. Too often they are discharged to their GP when transitions fail, only to be re-referred at the point of crisis. Today's panel brings together perspectives from parents, academics, and people with lived experience of asthma, epilepsy, sickle cell and neurodiversity.
Terri Quigley — Our Experiences of Asthma Service and Digital Health Passport
Terri Quigley, a Project Manager on the Children and Young People Transformation Programme in Cheshire and Merseyside, shares her family's journey with her son Ethan, who was born at 27 weeks and diagnosed with severe asthma. She describes how the Digital Health Passport gave Ethan the confidence to manage his condition independently — including completing his Duke of Edinburgh expedition with a complex medication routine. Terri also highlights the importance of meaningful participation in healthcare decision-making, and the "Too Much Blue, Get a Review" campaign aimed at reducing preventable asthma deaths.
Dr Lara Carr — Epilepsy, Young People and Digital
Dr Lara Carr, Director of Research and Impact at the Epilepsy Research Institute, explains why epilepsy — affecting around one in 100 people — demands better digital support, particularly for young people navigating the transition to adult services. She describes her work with Tiny Medical Apps to develop a Digital Health Passport for epilepsy, noting the complex relationship between epilepsy, learning disabilities, and mental health. Lara also outlines how standardised digital data capture could open new avenues for research and improve outcomes at scale.
Addassa Follett — Peer Mentoring and Digital Health Passports
Addassa Follett introduces the Sickle Cell Society's Children and Young Person's Peer Mentoring Programme, which pairs young people aged 10–24 with older mentors who share lived experience of sickle cell. She explains how the programme reduces isolation, builds confidence and helps young people manage the emotional and physical challenges of a condition that can lead to frequent hospital admissions and missed school. Addassa sees significant potential in combining peer mentoring with the Digital Health Passport to give young people the tools and support they need during transition.
Dawite Mosisa — Young Minds
Dawite Mosisa outlines Young Minds' three youth programmes — the Youth Panel for governance, Youth Advisors for paid operational co-creation, and Activists for younger campaigners. He describes an upcoming collaboration with Tiny Medical Apps focused on mental wellbeing, where young advisors will help shape the product through genuine co-design rather than token consultation. Dawite emphasises that meaningful youth participation means embedding young people in decision-making at every level, from strategy to daily operations.
Marta Denkiewicz — Designing Inclusive Health Apps
Marta Denkiewicz shares the team's work on accessible and inclusive design, driven by the discovery that epilepsy has a strong correlation with learning disabilities and neurodivergence. She introduces the concept of a companion app — a simplified, visual-first experience designed for young people who find the full-featured app overwhelming, while the main app serves parents and carers managing complex care networks. Marta stresses the importance of testing with real users from the outset and designing for the entire care ecosystem, not just the individual.
Dr Greg Burch — Digital Health Passports for High Risk Groups
Dr Greg Burch traces the Digital Health Passport from its origins with the Healthy London Partnership's asthma-in-schools programme to its current expansion across epilepsy, mental wellbeing and sickle cell. He highlights the platform's focus on the highest-risk groups — including care leavers, young people with special educational needs, and those who have experienced trauma — where fragmented care records and frequent service transitions make digital self-management tools especially valuable. Greg closes by reinforcing that the goal is to cover all long-term conditions that start in childhood, with user need driving every decision.