12 October 2021
When Professor Julian Higgins contacted Patient and Public Involvement (PPI) Facilitator Mike Bell for help recruiting two members of the public with an interest in childhood obesity to join a study advisory group, his instinct was to suggest they had enough adults on the team. He suggested they might benefit from the inclusion of the people who stand to gain most from the research, young people. Julian agreed and a few weeks later, Elizabeth (15) and Maddie (16) joined their first Zoom call with a team of researchers from both sides of the Atlantic.
Elizabeth: I have been part of the Bristol Young People’s Advisory Group (YPAG) since February 2020. My first ever YPAG meeting was face-to-face at the University of Bristol. Along with the added bonus of a delicious free lunch, myself and a group of young people my age spent the day speaking to researchers, learning about their upcoming projects and helping improve their ideas so that they would be more suitable for teens.
We were able to give our honest opinions knowing that they were genuinely helping the future of other people our age. Since then, the majority of meetings I have done have been via Zoom. This was a bonus for many (including me) as I could get in from school or being out with friends five minutes before and all I had to do was switch on my laptop and click on the Zoom link. Nobody would’ve even noticed if I was sat in my pyjamas for this as the camera was only ever pointed at my face. Then, as the YPAG session finished, I could log off and return to my daily life quickly and easily. It has been an amazing experience that I am incredibly grateful to be part of.
Maddie: I have just begun my A-levels and live at home with my family in Devon. As part of my Duke of Edinburgh award I looked for volunteering opportunities and discovered the YPAG. It turned out I couldn’t use it for my award (timings didn’t work out) but I carried on as it brought together a range of passions that I didn’t always get to experience in other places. These include discussing real life issues with other young people, gaining interesting insights into their perspectives and guiding researchers to understand young people better.
It’s great to have the opportunity to improve research and ensure young people help design studies for people like them. COVID-19 (and the move to online meetings) has meant that the studies and group meetings have been much more accessible to me as I live fairly far from Bristol. YPAG has helped me grow in confidence in providing my point of view on important things. I’ve enjoyed being listened to and I’ve learnt to communicate as equals with adults as well as other young people rather than being told what to do and think in the common way pupils experience life at school.
Elizabeth: I have taken part in many different projects, one of which was Create to Collaborate (C2C); a fun, interactive workshop to do with improving young people’s mental health. This was important for me since mental health is a current issue that affects teens all over the world. We can all feel alone and isolated – especially during the past 18 months – so to know that there are people and charities out there who genuinely want to help is great.
I have found YPAG has had many rewards, not only has it helped to boost my confidence, as I’m talking to many researchers about a range of studies in front of a group of teens my age (which I am now very comfortable doing), I have also made friendships and have had many opportunities which I didn’t even think were available for my age.
Maddie: Along with Elizabeth, I was recently asked to sit on a research advisory group for a three-year global study designed to prevent obesity in young people all over the world. I felt quite proud to be asked to represent young people. Mike explained what we would be expected to do and that he would support us throughout. Before this I had no idea how much work went into the planning of a study and I have found myself in admiration of all the different people contributing to try and improve and stretch our human knowledge and capabilities as well as improving young people’s health.
Elizabeth: The chairman of the Advisory Group is based in Canada and other researchers who Maddie and I speak to on Zoom are in the US.
Maddie: Joining the first meeting felt intimidating to begin with, as you would expect before you join a Zoom call with around eight super smart academics, some in other countries. However, once the initial anxiety was over it was quickly a very welcoming, safe environment that gave the feeling of a lot of people coming together to do what they’re passionate about.
Maddie and Elizabeth: Our friends and families are as excited as we to be a part of this important international study. We get an insight into how a research study is planned and designed and then carried out. It is an amazing opportunity that will hopefully benefit us personally as well as other young people for years to come. Being able to take part in this is a huge honour.
Julian: I was keen to involve children and young people in this project from the outset, although have to confess that I did not initially think of having them on the advisory group. I am ever so pleased that Mike suggested this, and am thrilled that we have found two willing, engaging and generous individuals in Elizabeth and Maddie. While we’ve only had one meeting of the group so far, it is clear that they have grasped what we are trying to do and will make very important contributions to our planning as the project proceeds.