Reflections on being a MAG advisor for the NITRO study
Reflections on being a MAG advisor for the NITRO study
If a brand-new restaurant opened on your street, it was easy to get to, had flashy decor and cool branding but the menu was a complete surprise until it came to your plate, would you go? Worse yet, if the menu was in a whole different language to yours and had no pictures, the food could potentially make you ill and you had no idea who to go to for help or to ask questions would you go?
It’s a sentiment in this vein that allowed for the development of patient information sheets (PIS). These are widely used by researchers to distribute information about research to people taking part in their research. No matter how interesting the subject matter is or convenient for the person taking part, a lack of information about what someone is actually signing up for would understandably mean people are a lot less likely to take part.
On the flipside, as a young person in the Midlands Advisory Group (MAG), I recently had the unique and impactful opportunity to help develop a PIS so that it is as accessible to as many people who read it, therefore making sure more people are able to take part. Given that the PIS is for a groundbreaking mental health study into uses of nitrous oxide (N2O) for depression, I feel that I’ve been a part of a really great team aiming to get people into research for something that is really needed. Discussing how to make the existing PIS for this N2O study with the rest of the young people in MAG who are really diverse and who used this diverse lived experience to advise made me reflect on what a difference we are actually making. By taking the time to consider how people with different mental health experiences or from different marginalized & communities groups would read the PIS, especially as young people who belong to those groups, we’ve made sure that this study’s PIS is written accessibly for a diverse audience by a diverse group of people. Putting myself in the shoes of someone considering taking part in this study, I know I’d be so put off if the PIS (my main point of reference for understanding what I’m even doing) was full of technical jargon and undecipherably long sentences with endless abbreviations. When we look at the fact that the endpoint of research like this is to benefit large groups of people, I believe that it is the duty of researchers to make sure communication about their work is as accessible as possible to these same groups of people, not just fellow academics.
I want to end by emphasising that being a part of MAG, by learning about how important PIS and the people who write them and read them are, I’ve learned that involving those with lived experience, especially young people, in making decisions in research is the way to go. I've reflected on the power that lies in communication and why participants should trust researchers but also vice versa.
We all know research is meant to help people, therefore it’s inevitable that people deserve to understand it - and as someone who helped input into even a small part of that process, I feel proud to have made that difference.
