Submitted by la334 on Mon, 21/09/2026 - 16:03
New guidelines co-created by people with lived experience of mental health challenges aim to help ensure that sensitive mental health data is used safely, transparently and responsibly in commercial research.
Every time someone receives healthcare, information is collected, and that information is sometimes used in research.
Using routinely collected health data can help researchers better understand health conditions and develop better treatments and services. But the use of sensitive mental health data – particularly by commercial organisations – also raises important questions about privacy, transparency, public benefit and trust.
Researchers and members of the public have worked together through DATAMIND, the UK hub for mental health informatics research, to develop new best-practice guidelines for organisations seeking to use mental health data for commercial or industrial research.
The guidelines were co-created with DATAMIND’s Lived Experience Advisory Group (LEAG), which brings together patients, carers and members of the public with personal or family experience of mental health challenges.
The work recommends that organisations are clear with the public about how and why mental health data is being used, involve patients and the public meaningfully in research from an early stage, and put robust safeguards in place to protect sensitive information.
The guidelines also recommend that routinely collected patient-level mental health data used without explicit consent should remain within NHS-controlled secure data environments, and that commercial applicants should not be given access to unconsented free-text mental health records.
The recommendations were developed as part of research led by Professor Rudolf Cardinal at the University of Cambridge Department of Psychiatry and published in Frontiers in Psychiatry earlier this year.
Crucially, people with lived experience were involved throughout the development of the recommendations and the resources designed to explain them.
One LEAG member said:
“Contributing to this project was about helping make mental health data research more understandable to the public. I hope these resources encourage people to think about how their data can be used in research and recognise that they can have a say in shaping that research.”
The group has also helped create a new animation explaining how mental health data can be used in research and the safeguards they believe should accompany its use.
Another LEAG member described the experience of helping to create the animation:
“I haven’t been involved with something like this before and, despite the serious message at its core, it’s also been really fun. From contributing ideas to helping choose the music, I got to share my thoughts on what the animation should look, feel and sound like.”
They added:
“I hope that it makes the topic of mental health data being used in research seem less daunting so that patients can feel informed, in control, and reassured.”
Jan Davies, a member of the LEAG and co-author of the research, said the guidelines reflected what people with experience of mental health challenges wanted to see from companies using sensitive health information.
“The animation shows how people with mental health [experience] want commercial companies to follow the guidelines when using this sensitive data. I consider mental health data could and should be used, for example, by pharmaceutical companies to improve medication research.”
The guidelines are intended for organisations holding mental health data, including NHS organisations, as well as commercial researchers seeking to use it. They include recommendations on transparency, information governance, public involvement, assessing the risks and benefits of proposed research, and ensuring research results and their public benefit are accessible.
The researchers have also made recommendations for NHS leaders and regulators, including making it easier for people to understand and exercise choices about how their data is used and improving the transparency of research using routinely collected health data.
Members of the DATAMIND Lived Experience Advisory Group and the group’s coordinator are presenting the project at the Public Engagement in Data Research Initiative (PEDRI) Forum on 22 September.
PEDRI supported the project through its From Standards to Impact Funding Award. The DATAMIND Lived Experience Advisory Group co-created it, and the University of Cambridge coordinated it.
Find out more
Read the research, Commercial or industrial use of mental health data for research: primer and best-practice guidelines from the DATAMIND patient/public Lived Experience Advisory Group, published in Frontiers in Psychiatry.