The power of co-production – lived experience in research

In this blog Emma Meilak, Public Involvement Lead at the Wolfson Centre for Young People’s Mental Health and Sami Gichki, one of the Wolfson Centre’s Youth Advisory Group members, share their thoughts on the importance of involving people with lived experience of mental health conditions in research.

Emma
Our vision at the Wolfson Centre is to conduct high quality, interdisciplinary research that improves the lives of young people. Public involvement is an integral part of our research, and we aim to put the lived experience expertise of young people at the heart of our work.

Our mission is to build a community of contributors whose expertise underpins, informs and supports the work of the Centre. This community guides us on the research questions that are important to young people and advises on how research is undertaken and communicated.

We aim to:

1. Listen to, integrate and value the voice of lived experience within our research and strategy
2. Build a community of contributors to secure long term relationships
3. Train the next generation of mental health researchers on the importance of public involvement
4. Shape a best practice blueprint for involving young people in research

Central to our public involvement mission is our Youth Advisory Group. The group formed in 2021 and consists of young people with lived experience of mental health difficulties aged between 14 and 25. We meet once a month to discuss research projects, undertake training and co-produce content to support the Centre’s activities and engagement events.  The group is active in multiple areas of the Centre’s work : they comment on grant applications pre submission, meet researchers to discuss project approaches, co-present at our annual Summer School and regularly produce blogs and content for us to use in socials and other activities. For example, the youth advisors co-produced a social media campaign with our communications officer for World Mental Health Day.

A cornerstone of our approach has been to foster reciprocal relationships with our young people, frequently seeking feedback on the opportunities and experiences they would like us to offer. These are wide ranging and have included, for example, trips to Edinburgh to deliver talks at conferences, access to senior academic staff for career advice and providing references for job applications.

That said, advising on exactly how we undertake our research is the bread and butter of the Youth Advisory Group’s activity. They have been instrumental in guiding the development of our new flagship Skills for Adolescent Wellbeing (SWELL)  clinical trial, a study focussed on protecting young people against depression. The group have been consulted numerous times, inputting into both the study design and the resources to be used as part of online CBT sessions.

The group do so much more than just give their opinions on how we do our research; they actively set the agenda for what we do here at the Centre. During one of our earliest discussions, mental health stigma was raised as a theme of key importance for our young people.  Given the significance of this issue for our advisors, we repurposed our Implementation and Engagement Board meeting to discuss this at length with a variety of stakeholders, including NHS clinicians and third sector partners, as well as the Children’s Commissioner for Wales and advisors from Welsh Government.

Over the past three years, I have been regularly blown away by the passion our young people have about making their voices heard in the field of youth mental health research. They want to contribute directly to how our research is designed, conducted and disseminated – as Youth Advisory Group member Sami explains next.

 Sami

Co-production: a means to include the voices of those that research is meant to benefit throughout the process to make it both more inclusive and making sure it’s targeted towards their priorities, something that can easily get lost on the clinical side of things.

At the Wolfson Centre, the concept of co-production is emulated beautifully. Young people working with researchers, constantly building on research whilst also challenging it wherever needed. A process that helps create what works for many.

The Youth Advisory Group advises on many different projects. Feeding our own lived experience directly to the researchers and saying: “this isn’t inclusive – this would work better”. We help make the research focus on the different challenges young people like us have faced when accessing mental health support in our lives.

As important as these spaces are from the lens of research, they are equally as important to us as young people. It is a bubble of safety and hope, somewhere we are free to express our struggles and are always given the support need to do this.

Fostering connection and building relationships between the members and the Centre is what creates these safe spaces to be vulnerable. The need for human connections and the benefit of meeting each other in person cannot be exaggerated. Here’s where the true beauty lies – in creating a culture of trust, kindness and appreciation, to ourselves and to each other.

Image from recent in person meeting where the young people noted their ideas for future sessions and used handprint drawings to celebrate the skills each member brings to the group.

It can be difficult to create a space like this, though the reciprocal nature of how the advisory group is treated equally to researchers makes it easier! We are encouraged to learn yet also encouraged to teach in the same capacity. Teach using the knowledge we have gained through lived experience. To make things even more equal, we are also compensated for our time and expertise.

In closing, the group’s structure used at the Wolfson Centre for Young People’s Mental Health could be a blueprint of how co-production could be embedded within research. Making something consistent that upskills young people, whilst making lived experience a priority without being exploitative.

Emma : The insights our young people have shared over the past few years has made our research more relevant, helped define what is acceptable to participants and improved the experience of participating in research. It’s been an absolute privilege for me to both work with them and get to know them.

Learn more about the Wolfson Centre and their public involvement work with young people on our website.