Our group is made up of 30 young people, age range 10-21 years old. We meet at Great Ormond Street Hospital (GOSH) in London six times a year. Since the Covid-19 pandemic we have been Zoom meeting. Several of our members are current or former patients of GOSH, some are siblings, and some are the children of staff who work at GOSH. Some, but not all, have participated in research studies or clinical trials. We are funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at Great Ormond Street Hospital for Children NHS Foundation Trust and University College London.
During our meetings we learn about health care and health research. We help researchers to understand more about what it’s like for young people to take part in studies so that they can design studies that better meet the needs of young people.
We also speak at conferences and events. We sometimes attend workshops outside of GOSH such as a recent trip (January 2019) to the Institute of Making where we helped with designing a research project to explore what materials (e.g.
plastic, metal, ceramics) patients would like to see used in different items of
hospital furniture that you touch a lot, like beds, over bed tables and door
Some of our members have written short biographies of themselves.
“My name is Leoni Morris and I am 17. I’ve been going to the group for about 18 months and I decided to join as my friend who was already going told me about what the group was and what it involved and I thought it seemed really interesting. I really enjoy coming and I like learning about different research projects. Being in the group makes you feel that you are involved in something important and it means you know you are helping people in the future.”
“My name is Bethany Rose, 17 years old. I’ve been with the group for 3 years. I really enjoy coming to meetings as we get to learn a lot and we are helping people. We also get feedback from the people we help and that encourages and motivates us to do more. I feel that we are involved in something really important and helpful.”
“My name is Freya Lynch and I am 17 years old. I’ve been part of the group for 8 years. I love being a member because I have so many opportunities to make an impact on future generations. I have spoken in conferences, event fairs, new projects, etc. Being a YPAG member has given me the chance to be a new person.”
“Hi! My name is Nicke Lynch and I am 9 years old and I have been part of the group for 5 months and my older sisters are part of the group too, I joined them because it sounded fun! At my first meeting I was very shy, but now I am more confident and it’s great fun. I want to learn more about medicine because I want to be a marine biologist.”
Hi, my name is Esme and I am 17 years old. I have been with the London YPAG for almost 7 years. YPAG is a fantastic opportunity for me and it has built my confidence and my knowledge of research and all kinds of disorders and illnesses. I have made good friends and enjoy every meeting. It is a great opportunity knowing that I am helping researchers.
“My name is Iona and I am 17 years old. My friend Leoni told me about the group. I find the group really interesting as I learn about health issues, etc. It makes me feel as if I might impact the future which feels very rewarding. And I really enjoy being a member of the group.”
“My name is Emma and I am 12 years old. The reason I joined this group was because my mum, who works in the hospital, recommended it to me and it turned out to be really fun! I like going to YPAG meetings because I like helping people and making new friends.”
“My name is Oceiah and I’m 13 years old. The reason why I joined YPAG was because I love Science immensely! I have good ideas which will help the Researchers with all their projects in the future. I hope this will help make life better for all the children that come to GOSH. Furthermore I like making new friends. My dream job is to be a scientist. I hope that we will be able to visit the Crick Science Institute with YPAG soon.”
“My name is Alexis and I am 8 years old. I have just joined the YPAG. I joined the group because my mum is a scientist and it really encouraged me to learn more about science. It is a good group I have learnt a lot more than before.”
‘Thank you to the group and you for letting me come along. For me personally it was a great experience. I have taken the feedback to the researchers and they are going to redo the forms and submit to ethics.’
‘Thank you for a most wonderful session with the MCRN CYP at GOSH yesterday. Could you please let the group know that they were not only helpful, but also inspiring. We will definitely incorporate their suggestions into our revisions of the information leaflets, and their comments into in the rationale for our approach to involving cyp in the project and I dare say others as well.’
‘Thank you for inviting me to come to the YPAG meeting… I’ve just read through all of the really useful feedback from the group and made some helpful changes to my info sheets. They’re a great group – all very thorough and had some really good suggestions to make!’
‘I really appreciated the discussion with your various questions and your opinions on the questions I had prepared. I am confident your comments will help our team in improving the design of our clinical trial’
‘I’ll tell you honestly that this group of young people is truly amazing and terribly useful. I really enjoyed the opportunity to present my project and I will incorporate their suggestions into trial leaflets’
Please contact firstname.lastname@example.org with any queries. Biomedical Research Centre at Great Ormond Street Hospital and University College London.
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