Developing guidance for involving children and young people in PSPs

The James Lind Alliance (JLA) priority setting process is a well-established and well-documented methodology. To date, there have been over 150 completed JLA PSPs in a diverse range of topic areas. The JLA is increasingly approached to support more complex and sensitive topic areas that challenge us to develop our method and our thinking without compromising on quality.

It is always exciting to support PSPs who plan to reach out and hear the voices of the typically less heard. In recent years, several PSPs have worked hard to achieve real, meaningful engagement with children and young people, involving them directly in the PSP process ensuring that their voices are heard in equal volume to the adults.

Since April this year, the JLA has been working with previous PSP leads and coordinators in the UK and the Netherlands who have involved children and young people in the PSP process. We are using the previous experience of those who have engaged with children and young people in a PSP to develop guidance to support future PSPs who want to involve children. Our plan is to utilise a co-design approach to actively involve children and young people who have previously been involved in a PSP in forming this guidance.

Our aim is to provide a link to this piece of work from the JLA Guidebook and to share our work more widely through a journal publication. We hope that this guidance will encourage and support future PSPs to engage with children and young people throughout the PSP process, ensuring that they have a say in health-related issues that involve and matter to them.

The JLA would like to thank all those involved in the project to date for giving their time, sharing their experiences and expertise and for their dedication to this piece of work.

We look forward to sharing the final guidance in the next few months. In the meantime, members of the Children's Cancer PSP Steering Group have written a journal article about their work engaging children in the PSP.