Recently I was fortunate enough to secure an NIHR Pre-doctoral fellowship, and after a few years dipping my toes in the clinical academic world I suddenly found myself full-time in research. Knowing that my project, common child health and wellbeing outcomes across diagnostic groups, really needed input from children, young people and families, I was keen to begin PPI/E as early as possible.
So, on a very wet and windy November day I made the journey from Newcastle to Cardiff to meet the YourRheum advisory group, to talk all things outcomes. YourRheum is a group of 11 to 24 year olds diagnosed with rheumatic conditions. The group allows the young people to get involved with and advise on research. Rheumatology is my clinical world, and so it seemed like the choice for my first time in PPI/E.
Like many early career researchers, I was still hazy on the concept of PPI/E. I especially found it hard to make the distinction between PPI/E and data collection. Both involve asking clinicians, academics, young people and their families about outcomes and life events important to them – so what is the difference?
After rounds of discussion and reflection among the team, I concluded that one key difference was about the balance of who is asking questions and from whom. I began to see that in PPI/E the balance of who is doing the telling and who is doing the asking is different from those in research. I realised I needed more of a conversation than me asking questions or me looking for particular answers.
To take this realisation forward, I really wanted to see if I could find a way to level the playing field for such a conversation. So that the various groups of people involved in my project (young people, families, clinicians, policy makers, academics…) all could have a meaningful say. After some discussion among the team, we came up with the idea of a snakes-and-ladders-themed, art-based activity.
One of our colleagues had used a similar idea before, broadly building on the principle of visual matrix method. Obviously, we were not using this as a research methodology, but the idea of using something concrete, tangible and visual to stimulate discussion about my research ideas was appealing. We thought it might help the young people to articulate their views and provide a range of means to express their opinions. We chose snakes and ladders theme because:
- we thought it would be familiar to most people, and so might help people feel more at ease in facing an otherwise unfamiliar person and task;
- it spoke to the core idea of my research, i.e. that there are many paths of life with various ways to arrive to the same outcome points; and
- it incorporated the idea of ‘good and bad stuff that happens’ – the enables of and barriers to outcomes.
Once we had the idea, we then worked with a visual artist and illustrator to produce the materials. She drew some drafts of a snakes and ladders inspired ‘life map’, as well as the snakes (bad stuff) and ladders (good stuff) to go with it, until we were all happy with the results (see below). We then we got these materials professionally printed and cut out the snakes and the ladders. I also sourced out an array of art supplies and some magazines that I thought might facilitate the discussion.
And so armed with an A0 size life map and all the materials to go with, I headed to Cardiff. I spent a very happy afternoon with the YourRheum advisory group, recording onto the snakes and ladders map the things that were important to them as they went through life.
As reflections, I felt that doing the activity really helped engage some of the quieter members of the group, and being able to listen to the discussion between group members and follow their thought processes going on in real time was also helpful. It felt like using an activity really helped the young people to focus their thoughts. I also wondered if it perhaps allowed them to lead the reflective process, and sharing of insights, more than had I just asked them for their thoughts directly. The YourRheum group’s take on the day, along with pictures from the day, can be found at https://yourrheum.org/2019/11/15/when-your-rheum-tackled-the-hearty-dragon/
Overall, I got some great feedback from the group about how to explain and frame what we are trying to do, and this was really useful in helping to shape my thoughts on my work. I would definitely encourage researchers to think creatively about how to engage anyone in PPI/E, not just young people, and to use activities to help generate thoughts and discussion.