Public involvement has been a core value for CADRE from the start. The data included in CADRE is about young people, so we made sure they and their families were at the heart of its creation. We asked young people and their parents, carers and guardians to help us design the approach, decide how the data should be used, and who should be able to use it. Their answers and feedback will continue to be a critical part of the governance and management of the database. As we expand the CADRE network beyond Cambridge we will work with patient and public representatives in each region to understand local needs, values and priorities.

People may have concerns about how their data is used, especially their health data. They may be worried about data security, and what their data could be used for in the future. To get the design right from the start, we wanted to understand the common concerns, and how we could address them. We also wanted to know how we could make CADRE transparent, so that people knew what was happening to the data, and who was using it. This information helped us shape the project and will continue to do so in the future.

A key outcome was that young people and their parents and guardians should be meaningfully involved in making decisions about how the data is used. Patient and public representatives will be included in our Data Access Committee, which will make decisions about who can access the data, and for what purposes. Another important finding from this work was that public involvement in research, in particular involving children and young people, can be done a lot better.

To help support this, we established CA:RING: a diverse public involvement group including young people and their guardians which aims to support paediatric research. We are continuing our extensive patient and public involvement (PPI) programme to support the development of CADRE every step of the way. If you would like to hear about upcoming opportunities for involvement, please get in touch with us via caring@annafreud.org. Keep checking this page for updates and to find out how you can be involved with CADRE.

Watch our TikTok video about the patient and public involvement work we did to create CADRE.