Between January and March 2026, more than 150 young people aged 12 to 26 took part in 13 engagement sessions across the region, online and in person. They were recruited through schools, colleges, universities, youth forums, charities, carers’ organisations and community groups. In addition, two questionnaires captured the views of those who could not attend in person.

Together, these activities explored what young people understand about health data and secure data environments, their attitudes to data sharing and governance, their views on consent and public involvement, and how they would like to be engaged in future.

What we heard

Young people showed a thoughtful and sophisticated understanding of health data and its role in improving healthcare. Many could distinguish between different types of data and recognised how it supports better diagnosis, treatment, prevention and service planning.

Overall, they were broadly supportive of health data being used for research and service improvement, but that support was not unconditional. Their confidence rested on four things: transparency about who can access data and why, robust security and governance, meaningful choice and control, and clear evidence of public benefit.

One participant reflected:

“I feel comfortable sharing my data if it benefits others in the treatment of any illness.”

Trust, choice and transparency

Trust was the strongest theme throughout the discussions. Young people told us that confidence depends on honest, open communication about how data is used, who can access it and what safeguards are in place. They wanted to understand the risks as well as the benefits, and felt that clear information helps prevent uncertainty and misinformation.

The ability to opt out was widely seen as a fundamental right and an important part of building trust, particularly around sensitive information such as mental health data. Many felt that genuine choice would make people more comfortable supporting data sharing overall.

Participants also wanted a role in decisions about who can access health data, with real interest in youth representation within governance structures where the right support is available. They saw public involvement as central to accountability and trust, and want to be active participants in these conversations rather than passive recipients of information.

One participant shared:

“Patients deserve to have full autonomy of their care as this makes them feel more valued and empowered.”

Engaging the next generation

A consistent message was that health data and secure data environments are not yet widely understood by young people. Participants suggested reaching peers through schools, colleges and universities, social media, peer-to-peer engagement and creative, interactive approaches, using language and formats that feel relevant to them.

At our dedicated Birmingham event, participants developed their own concepts for videos and animations explaining health data research to their peers, showing the value of co-producing communications with young people rather than simply communicating to them.

For further information about Young People’s Engagement, please read the full Executive Summary.