Many young people with lived experience of type 1 diabetes (T1D) find research hard to access, difficult to understand and are unclear how it benefits them. To break down these barriers, the Cardiff Diabetes Innovation Committee (CDIC), a UK-wide group of young individuals (aged 11–23) living with T1D, was set up to co-develop an interactive in-person research event around research that matters to young people living with T1D. The committee was co-founded by Dr Pearson (Associate Professor of Cellular Immunology, University of Birmingham) and Breakthrough T1D UK staff, Ms Madeleine Bonser (Research and Involvement Officer) and Ms Alex Wild (Volunteer Manager), with 12 young people living with T1D across the UK.
In September 2024, CDIC met online for the first time enabling everyone to introduce themselves to each other and also to begin the process of generating ideas around what might make a good in-person interactive event. Committee members also provided information on what they wanted to get out of this experience, which included learning more about research, meeting other people with T1D, and gaining event organisation skills. CDIC subsequently met every month on a Monday evening to enable the committee members to attend after school/work. In total we hosted 21 virtual meetings over 18 months, including two festive quizzes.
During these meetings the committee identified the research topics that were important to them which included immunology/immunotherapy, stem cell research, emerging technological advances, and mental health and wellbeing. Based on these interests, committee members were encouraged to identify researchers within these fields of research for all members to review. For each topic, we aimed to invite two researchers from across the UK to provide an overview of their research (10 mins) and how they could make their research more interactive (5 mins). Invited researchers were told in advance to plan their presentation for a lay non-scientific audience of young people and were also advised that the committee members would be scoring their presentation. The criteria they chose included creativity and clarity of the presentation and ability to answer questions, ability to communicate to all ages (notably young individuals), how has/will lived experience influence the project, how will the project move forward to benefit those living with T1D and ability to stay on time.
At the end of the presentation, committee members asked any questions they had. After the meeting, CDIC provided feedback that was sent to the researchers to share what the committee enjoyed and what would make their presentation/interactive ideas better. Invited researchers included Professor Sarah Richardson (University of Exeter), Dr Christopher Carlein (University of Oxford), Professor Shareen Forbes (University of Edinburgh), Dr Emma Berry (Queen’s University Belfast), Dr Marietta Stadler (King’s College London), Dr Matt Webber (University of Notre Dame, USA) and Dexcom (a continuous glucose monitoring diabetes technology company) who gave up their time to support the project. Feedback from invited researchers included:
“This is an example of excellent practice in research and something that should be more common practice in academic work involving individuals with lived experience. I gained a lot from taking part in this activity, not just the insight of the group, but also seeing how such a PPI group works and seeing how it can be effectively facilitated by a committed and passionate researcher.”
“I thought your group of ambassadors were wonderful, very engaged and had very thoughtful questions. They should be proud of themselves. Please tell the group they were excellent role models for their community.”
Making plans
CDIC also contributed to researcher grant feedback (leading to a grant success) and provided comments on the National Diabetes Paediatric Audit Youth Voice Communications Project.
At the end of 2025, event planning was heavily underway aided by Breakthrough T1D UK’s Discovery Day Planning Team (Chris Bright, Sarah Davis and Bella Allchorne). Two interactive research sessions were planned, feedback from CDIC was given and these were subsequently improved upon. CDIC promoted the event through three committee members generating their own videos to encourage young people to attend the event. These videos were shared on Breakthrough T1D UK’s social media pages (thanks to Aliceah Welsh) and in total generated over 180 likes in the first five days.
The event
Fifty-seven young individuals attended the interactive research workshop, which was part of a larger Breakthrough T1D Discovery Day at the West Bromwich Football Club on Sat 18 April 2026. The number of attendees was nearly triple the number of young people we expected to attend. The two sessions (each about 50 mins long) included:
Session 1: This session was structured to provide a short lecture about what autoantibodies are, how they associate with risk of T1D, and why it is important to identify individuals with T1D-relevant autoantibodies (e.g. access to immunotherapies), providing key background. Then we moved on to our hands-on activity, where attendees got to perform their own mock autoantibody ELISA to identify which samples were from people at risk of developing T1D. This session was run in partnership with Bio-Rad Laboratories, utilising their ELISA Immuno Explorer kit, providing plasticware, reagents and a great teaching guide for people to run a real scientific experiment!
Session 2: Dr Christopher Carlein (David Hodson Lab, Oxford University) led an interactive activity making insulin-producing stem cells using coloured solutions and cotton wool balls to mimic different stages of stem cell differentiation. Dr Emma Berry (Queen’s University Belfast) led a market research session asking for feedback on different types of wellbeing tracking apps and other ways young people monitor their wellbeing to aid the development of a new app to support those living with T1D. Participants also got to ask their own research questions and share their lived experiences of T1D in a session led by Professor Susan Wong (Cardiff University).
Excellent feedback
Feedback from participants indicated that 100% of attendees would recommend this event to other people and want to see more interactive research activities similar to what we ran. Attendees loved the hands-on experimental work and the colour-changing experiments, and the opportunity to interact with researchers. Some examples of the feedback from attendees we received included:
“I have learnt more than I ever thought I would”
“Hearing from all the researchers first hand is amazing, especially because we get to ask questions which gives the event such a personal feel”
“There is a high chance I wouldn't know about much of the research going on if I had not attended the session”
The event was also very beneficial to immunologists and researchers attending the event. The feedback from researchers included:
“For me this was the first time planning and conducting such an activity and I have definitely learned a lot during the process and on the day!!”
“Everyone was super helpful and it was amazing to see how all of you coordinate these events!”
“It is a great experience that motivates you and leads to interesting new viewpoints that help you think outside the box about your research.”
“I was asked many intriguing questions, which helped me take a step back from all the research details and see the bigger picture.”
We were fortunate to have a team from Bio-Rad Laboratories (Haider Aljabori, Field Application Specialist – Flow Cytometry, Immunology, and Cell Based Techniques), Adam Higgins (Southwest UK & South Wales Account Manager) and Stephen David (Regional Marketing Manager, North East Europe) join us on the day, with the following quote from Stephen:
“A great example of how bringing real science into a community setting can spark curiosity and make it more accessible”
Together, the event attendance and feedback confirmed that we had made research accessible to young people and had found new interactive ways to engage with them.
Funding
We could not have run this event without funding from the British Society for Immunology (Communication and Engagement grant), support from Bio-Rad Laboratories and support on behalf of the ‘Steve Morgan Foundation Type 1 Diabetes Grand Challenge’ by Breakthrough T1D UK (formerly JDRF) and SMF (grant number 2-SRA-2024-1474-M-N). Additional thanks to Waters Bioscience (formerly BD Biosciences) who were kind enough to provide promotional handouts for the attendees too.
Top tips
To anyone planning a communication/engagement activity with young people, our tips are:
- Co-develop – work with those with lived experience! It is so rewarding and makes the event/activity more impactful
- Work with charities to gain insight into those with lived experience – they often have PPIE and can help you set up your own group
- Take your time – allow the young people to get to know each other and the founders so they feel comfortable sharing their opinions/insight
- Get feedback on your planned activities in advance, so they’re the best they can be for the actual event
- Make the events/activities fun!
Future plans
Through CDIC, we have co-developed an arsenal of fun interactive research activities that we can take on tour across the UK. From the attendee feedback it is clear there is a demand and interest for these activities, and we hope to continue our joint collaborative engagement work with both Breakthrough T1D UK and Bio-Rad Laboratories.