Young people help shape how we talk about health data
Young people from across Yorkshire and Humber are helping the Yorkshire & Humber Secure Data Environment (Y&H SDE) make information about health data and research clearer and more accessible.
At a recent meeting of our Young People’s Advisory Group (YPAG), members aged 16–25 explored how the Y&H SDE works and, importantly, how we should communicate its work to other young people.
The group told us that clarity and real-life examples matter. They wanted clearer explanations of who can access health data, why they can access it and the safeguards in place to protect people’s information. They also felt that terms such as ‘innovation’ and ‘personal information’ can be too broad without further explanation.
A strong theme was the importance of showing what using health data for research can actually achieve. Young people wanted to see real examples of research and the difference it can make to patients, NHS services and the wider public.
Reaching young people in the right way
The group also had plenty to say about how we communicate.
Short videos, Reels and TikTok-style content were suggested as more engaging ways of explaining complex subjects, particularly when presented by a person rather than relying solely on written information.
They also warned us not to make content feel like advertising. It needs to be relevant, engaging and quickly answer the questions young people are likely to have.
Listening and learning
The session generated thoughtful questions about how research is approved, how researchers use data securely and how young people themselves could become more involved.
Their feedback will now help inform how we develop our communications and explain the work of the Y&H SDE to younger audiences.
By involving young people in these conversations, we can make sure we aren’t simply giving them information. We’re listening to what they want to know and using their views to shape how we communicate.
Thank you to our YPAG members for sharing their ideas, questions and perspectives.