Context and resources:

Notes from information sharing workshops 2025/2026

Since late 2025, we have been working with CYPF to gather their insights about information sharing and confidentiality following an action card being opened:

“As young people, we want emotional wellbeing and mental health services to create a leaflet explaining consent and information sharing so that we understand in more detail what we need to consent to and to know where we can find this information, and what happens to our personal information.”

This has been done with the move to System 1 in mind - where young people’s notes will be uploaded to one electronic records platform and accessible to all Mindworks partners. As well as the full document of notes from the workshops at the top of this page, we’ve included some key takeaways from the discussions with young people:

• Where young people’s information is stored and how it is used is very important to young people
• They often don’t understand how their information is shared, and have particular concerns about what is shared with parents and carers, and when
• They told us having a young person-friendly version of the Mindworks privacy policy would be useful - this is in development following feedback from young people
• Young people had mixed views on sharing their story multiple times; some said this can be helpful to explain things in their own words, whereas others said it can be hard talking about potentially difficult information multiple times. Young people said it would be useful for staff to have some background information but not to jump to assumptions

Other data about the topic:

NHS Youth Forum:

Members of the NHS Youth Forum, campaigned on the fact that health care rights were not often explained to young people. They said:

“Confidentiality, consent and feedback are vital elements to every individual’s health care, including children and young people. Just like adults, we want to make decisions for ourselves so it is vital that we are aware of our rights”.

Amy: “When I eventually realised I had a right to confidentiality and was of the age and competency level where my parents didn’t have to be involved in all my appointments, and didn’t have to know the ins and outs of every conversation (especially in mental health services), I felt more comfortable to express my thoughts and was able to progress more and achieve better outcomes.

Rowan: “Knowing my rights around accessing my records meant I felt able to ask for my GP and Hospital records during a period of painful illness. During this time I was referred and self-referred into various primary and secondary care services. The records I kept avoided me having to explain things over and over again – which was a challenge in itself when you’re in that much pain! It also meant that doctors could discount possible diagnoses and not have to repeat tests, saving money too. If I hadn’t known that I could request my records, I wouldn’t have asked for them.”

📚Studies and research:

Privacy and confidentiality were particularly highlighted as an issue for young people, both in the literature and in our focus groups. In one study, one in four young people asked felt that they were not given enough privacy when being treated or examined.