Involving young people in research

By Nhung

At the McPin Foundation, we’re always talking about involving those with lived experience in research. This is sometimes referred to as Public and Patient Involvement (PPI) in research. In this blog I discuss what PPI has meant for one of our projects, Right People, Right Questions, from three staff members who are involved in the project (myself, Lauren and Thomas).

About the Right People, Right Questions

Young people’s mental health is underfunded and under-researched. While it is important that more is spent on research, it is vital that limited resources are directed effectively to the questions that matter most to people. This project aims to collect the most important unanswered questions about young people’s mental health for researchers to answer. It is open to young people aged 11 – 25, parents and professionals who work with young people. There is a group of 10 young people (known as the Young People Advisory Group or ‘YPAG’) aged between 14 and 25 who advise us on the project.

So, what have we learnt with working with young people in research?

For me, it’s made us think strongly about our language. In our little research bubble, ideas are expressed in a certain way which may not be well understood to anyone on the outside. By providing a fresh set of ears and voices, the YPAG has forced us to reflect on how we express ideas about the project. They have been vital in ensuring that the language of the project is made as accessible as possible.

However, research projects are not just about ensuring accessibility but also ensuring that the scientific message behind them is correct. Therefore, having a back-and-forth relationship until common ground is found between the researchers in ensuring scientific accuracy, and the young people in ensuring accessibility, is vital.

A sticking point for Lauren, the project’s co-ordinator, is how overwhelmed we have been by the fresh, new ideas that we would have never thought of beforehand.  We have had to rethink entire strategic decisions as a result of focus group meetings. This has made Lauren realise that it isn’t about “who has more experience, but the differences in experience in a research group”.

There was one occasion where we were having a teleconference with a group of mostly mental health professionals and two young people. In the meeting, there was agreement that the original wording of a website draft, “promoting awareness of emotional wellbeing and mental health”, didn’t quite work. After a long silence amongst all of our apparently-experienced brains trying to think of a better word in the background, a young person (aged 17) chirped, “how about “raising awareness”. Raising awareness! That’s perfect. Why didn’t we think of that sooner? That wording now appears on our survey and our website.

Finally, for Thomas, it’s reinforced the notion that researchers must “work differently” with different groups. Traditionally, focus groups are a formal, around-a-large-table affair, with a researcher standing up at the front explaining the project. This was the case in our first focus group with the YPAG. However, upon asking for feedback, we realised that members of the YPAG wanted smaller group activities. As a result, all consequent focus group meetings have taken place with smaller groups and the difference in the output has been profound.

How we can measure the difference the use of PPI makes to a project is an ongoing debate with research still continuing. Here is one of the latest studies published as part of the discussion. In terms of measuring the impact of young people’s involvement specifically, there is very little, or indeed any research on the topic.

For now, however, I think it is fair to conclude that all of us, researchers and non-researchers alike, are constantly learning from each other and have something of value to give. Over the coming months, we’ll be continuing to work together to develop the project. In the coming weeks, we’ll be publishing blogs from members of the YPAG to tell us their thoughts on working on the Right People, Right Questions project. So watch this space!

If you want to share your unanswered questions about young people’s mental health for researchers to answer, complete a short survey here.