Living with a long-term condition affects much more than physical health. In this webinar, the team behind a six-month co-design project share how young people, parents and carers shaped a new mental wellbeing feature for the Digital Health Passport — and what other digital health teams can learn from the process.
Victoria Betton — Welcome & Introduction
Victoria Betton, Director for Digital Data and AI at Health Innovation Kent Surrey Sussex, chairs the session. She supported the co-design element of the project alongside Tiny Medical Apps and YoungMinds before taking on her current role.
Dr Greg Burch — Why Mental Health Matters for Long-Term Conditions
Dr Greg Burch, Clinical Director at Tiny Medical Apps, sets out nine years of Digital Health Passport development, from asthma and allergies to epilepsy, sickle cell and a platform for all long-term conditions. He explains why equal availability does not mean equal uptake, and why mental wellbeing is the next step: young people with long-term conditions are far more likely to experience mental health problems, and each makes the other harder to manage.
Victoria Betton — Project Design and Co-Design Approach
Victoria walks through how the project was run: a theory of change, a light-touch evidence review, two co-design workshops with younger and older age groups, parent and carer panels, and individual think-aloud user testing. Young people asked for trusted content, low-friction design and encouragement without pressure. Parents and carers focused on governance, privacy, safeguarding and a strengths-based approach. She closes with the key lessons: embed safeguarding from day one, work with a trusted partner, iterate constantly and build on existing evidence.
Marta Denkiewicz — Prototype Design and User Testing
Marta Denkiewicz, Senior User Researcher at Tiny Medical Apps, demonstrates the prototype shaped by 18 young people and five parents across several rounds of feedback. Highlights include easy-read summaries of the terms and privacy notice, a journey companion inspired by pet-care apps, a gamified learning journey with YoungMinds content, opt-in streaks after young people said streaks felt like pressure, a fully customisable mood and lifestyle tracker, crisis signposting, and practical tools such as guided breathing, grounding exercises and recorded affirmations.
Sarah Kershaw — Why YoungMinds Got Involved
Sarah Kershaw, Philanthropy Manager at YoungMinds, explains why the UK's leading youth mental health charity partnered on the project. She describes the pressures driving today's youth mental health emergency, YoungMinds' advice and support for young people and parents, its campaigning work, and the youth panel, youth advisor and activist programmes that took part in the co-design, all underpinned by a strong safeguarding approach.
Dawite Mosisa — Running the Co-Design Workshops
In a clip from the Up, Up and Away podcast, Dawite Mosisa, Senior Participation Officer at YoungMinds, describes bringing advisors and activists together for the first time. He highlights two things he valued most: young people being paid for their participation, and the "you said, we did" feedback loop that showed them how their insight changed the design.
Becca Randell — A Commissioner's Perspective
Becca Randell, Associate Director of Translational Research at Health Innovation Kent Surrey Sussex and a former commissioner of children and young people's services, urges anyone commissioning or delivering services to make sure innovation is led by the people who will use it — and points to this project as an example.
Emma Moffat — My Independence Journey
Emma Moffat from the NIHR HealthTech Research Centre in Paediatrics and Child Health introduces My Independence Journey, a new project with Tiny Medical Apps to support young people moving from paediatric to adult services. Building on frameworks such as Ready Steady Go, it will let young people rate their confidence in managing their condition and link them to learning and existing app features where they need support.
Reflections and Next Steps
Greg reflects on how well the engagement and safeguarding worked, and sets out the roadmap for the year ahead: making the Digital Health Passport accessible to people with moderate learning disabilities and different language needs, including translated content and voice-based features, always guided by the needs and preferences of young people.