By Duncan Barron,
In October members of YPAG KSS were invited to present at the prestigious ‘Involving Children and Young People in Research’ Showcase Event organised by INVOLVE and held at the Centre for Public Engagement at Kingston & St. George’s, London.
Dr Louca-Mai Brady kicked off the event with a focus on undertaking inclusive approaches to children and young people’s (C&YP) involvement in research. This was followed by a presentation showcasing one of the Reaching Out projects funded by INVOLVE and the Research Design Service (RDS). This inspiring collaborative project from the East of England centred on working with young refugees and other young people from the deprived area of Jaywick Sands (see video here) The subsequent talk was on the development of the Young Adult’s PPI (YAPPI) Group in Southampton which was followed by some personal reflections from Sophie Ainsworth, a young person with personal lived experience of Lupus, who founded the charity RAiISE (Raising Awareness of invisible Illnesses in Schools and Education).
Two young members of YPAG KSS, Alexis and Kit then joined Duncan Barron (facilitator) to help showcase the work of their local YPAG. Duncan summarised how the YPAG KSS has been set up in its first two years highlighting some key features of how the group, along with how the parallel Parents and Carers (PaC) group, operates. Kit spoke about his own experiences of being a research participant in a paediatric Wii Fit and cerebral palsy feasibility research project along with how his input helped inform further developments of this study and a future funding submission. Alexis also spoke eloquently about his own experiences of being part of the Saturday morning YPAG KSS sessions and the benefits he has gained from attending.
Reflecting on Kit & Alexis’s contributions to the session, Duncan said:
“I have been incredibly impressed by Kit and Alexis’s willingness to speak at public events and share their own personal reflections and insights of patient and public involvement (PPI) and C&YP research. This has really helped the researchers who have attended and heard them speak. Kit and Alexis have been very diligent and committed in their preparation and also professional in their ability to speak publicly. They are both very natural speakers who seem to take speaking in front of academics and researchers in their stride. We are very lucky to have them as part of YPAG KSS. I look forward to inviting other members who would like to, to help at future events.”
One attendee at the event, on hearing Kit speak, wrote on Twitter:
“Listening to a young person speaking on PPI who was totally captivating. He said ‘I have a disability…there is nothing I can do about it, but lots I can do with it…I don’t have years of medical training, but I can still help the medical profession.”
Kate Sonpal, the event organiser said:
“It was a pleasure to have Kit and Alexis speak at this event. They spoke eloquently about their involvement in research and showed why listening to the voices of children and young people is so crucial. They have a natural ability to connect with an audience which is something that can’t be taught! Kit and Alexis should be proud of all that they have achieved.”
The INVOLVE C&YP Showcase Event also saw the launch of INVOLVE’s latest guidance on ‘Involving children and young people as advisors in research: top tips and essential key issues for researchers’ available here.