A new Digital Health Charter, developed with 18-25 year olds living with long-term health conditions, is calling for researchers, health and care services, policymakers and digital technology companies to move beyond assumptions and involve young adults in digital health innovations that meet their distinctive needs.
There are 6 million young adults in England and Wales. Around 1 in 5 lives with a long-term health condition. Yet they are often under-represented in health research despite evidence suggesting worse healthcare experiences than other groups.
The Young Adults’ Digital Health Charter, released today, is the result of a collaboration between the South Yorkshire Digital Health Hub, young adults from across the South Yorkshire region, the Association for Young Peoples Health (AYPH), Chilypep, and Hopkins Van Mil.
The Charter's 10 principles highlight key concerns and opportunities for digital health innovation. These include the need for affordable digital health, the importance of national digital health system interconnectivity as young adults relocate to seek new educational and economic opportunities, and the value of supportive healthcare professionals trained in digital health offering integrated in-person and digital health services.
Participants emphasised the need to go beyond assumptions about young adults as ‘digital natives’ and support them to find and use trustworthy digital health tools and information.
A young adult participant said: “Digital health is SO important and often ignored or forgotten about. With this Charter our voices as young adults were heard and used to help create it. It spreads light on important topics and I'm happy to be a part of it. Young adults’ voices are being listened to."
The Charter’s 10 Principles for Digital Innovation:
1. Recognise us as a distinct group with unique and changing digital health needs
2. Support us as digital learners, not ‘digital natives’
3. Ensure digital health tracking supports us as we develop as young adults
4. Enable digital health support to move with us
5. Ensure affordability of digital health for young adults
6. Integrate digital health consistently and appropriately with in- person services
7. Support and train healthcare professionals to use digital health tools with us
8. Help us to navigate trustworthy digital health sources
9. Improve transparency and trust in who is involved in digital health companies
10. Explain what’s happening with our Digital Health data in ways that we’ll actually engage with
Professor George Peat said: “As the NHS 10 Year Plan embraces an increased focus on digital health tools, it's vital we develop a better understanding of what different people and communities need from digital health technologies. If we don't, we risk perpetuating or even worsening existing health inequalities. The Young Adults’ Digital Health Charter is important, highlighting some of the unique needs during this important phase of life and encouraging early, meaningful, and sustained involvement of young adults.”
About the project partners:
Engineering and Physical Sciences Research Council
The Engineering and Physical Sciences Research Council (EPSRC) is the main funding body for engineering and physical sciences research in the UK.
Hopkins Van Mil
Hopkins Van Mil (HVM) facilitates engagement so that voices are heard, learning is shared and understanding achieved. HVM specialises in using social research techniques such as the design, facilitation and reporting on deliberative processes including public dialogue and Citizens’ Juries.
Association for Young Peoples’ Health (AYPH)
The Association for Young Peoples’ Health works with everyone to understand and meet the particular health and wellbeing needs of 10-25 year olds. Young people and their rights are at the centre of everything they do.
Children and Young People’s Empowerment Project (Chilypep)
Chilypep (the Children and Young People’s Empowerment Project) is a charity dedicated to raising the voice of children and young people, giving them the platform to shape their world and stay connected. They work with all young people in Sheffield, Barnsley, South Yorkshire and Beyond. Their purpose is to promote the rights, wellbeing and opportunities of all young people across South Yorkshire.