By London YPAG,
Hi, my name is Raena and I joined GOSH YPAG in January 2025.
I first heard about the group when a researcher based at the UCL GOS Institute of Child Health- who was working on a gene therapy clinical trial – came to give a talk at my school. Her talk really inspired me and ignited my interest in getting involved.
The second meeting of the year was online, welcomed 26 GOSH YPAG members, and offered flexibility for our members to come and go from the Zoom call as needed.
Here’s my take on our March 2025 meeting.
PEEK- Participation, Education, Empowerment, Knowledge Healthcare Transition App for young people by young people.
First up: The PEEK team! They informed us on their latest project focusing on developing a social media app to help young people transition from child to adult healthcare.
The Team then reached out for our opinions on ways to make the app more accessible to all patients. We gave feedback proposing the idea to implement a chat forum function. A key point of discussion was around the confidentiality of the users in order to make it a safe and informative platform for everyone.
Imaging of Tumours Study
Following that, Dr John Apps from Birmingham Women’s and Children NHS Foundation Trust enlightened us on the advancement of different methods of imaging brain tumours in our learning session.Ranging from X-rays, CT and MRI scans to AI technology.
AI in Healthcare and GOSH
After lunch, we were in for another engaging session held by the GOSH Data Research, Innovation and Virtual Environments Unit (DRIVE) team where they introduced us to new technological innovations like TORTUS which is an app that speeds up writing clinical notes during appointments and a new paediatric X-ray that instantly detects fractures!
During this session we separated into three breakout groups on Zoom, allowing for more in-depth discussions regarding the pioneering technology, where we discussed the concerns surrounding Artificial Intelligence (AI) in healthcare. We had the chance to jot down our thoughts on a note-taking app called ‘Miro’ which allowed for everyone to share their suggestions on ways to make patients feel reassured around AI.
BRIGht-NEC:Bowel Resection using Indocyanine Green Fluorescence Angiography to preserve Intestinal length in Necrotising Enterocolitis
Necrotising Enterocolitis is a condition causing inflammation of the intestinal tissue which affects premature babies. Usually, it can be treated with antibiotics but in severe cases surgery is required but it is extremely difficult to carry out. For this reason, a Consultant Neonatal and Paediatric Surgeon at GOSH is focussing on a new imaging technique in surgery using a non-toxic fluorescent Indocyanine green dye to aid in identifying perforations in the bowel and as a way to avoid damaging the intestine further.
In Breakout rooms, we discussed incentives on how to get mothers and their babies on board with the research, taking into consideration the emotional impact the condition itself has on families and one point of conversation was ensuring the safety of the dye.
C-POS UK: Children’s Palliative Care Outcome Scale UK
Lastly, a nurse consultant at The Royal Marsden NHS Foundation Trust presented her incredible research proposal to develop and validate a person-centered outcome measure for children and young people and their families affected by life-limiting and life-threatening conditions.
We were asked for our insight on how the findings of this research could be addressed to young people. We reviewed the content of a questionnaire designed for patients receiving palliative care and offered incentives to engage young children in the study.
YPAG achievements
To conclude with celebration, our co-ordinator reflected on the achievements of GOSH YPAG so far!
A final reflection from me:
What drew me to the GOSH YPAG was the opportunity to help shape research that is more inclusive and representative. I love knowing that my voice is being heard and that it can help influence positive change-even in a small way.
Over and out for now!
Raena
GenerationR young people and Patient Research Ambassador talking about exciting things happen when you involve young people to promote better research for better healthcare.
In this short video, Nottingham YPAG member Sheena talks about why she wants to get involved in research.
This is a workshop on clinical research that can be run by teachers with young people as a learning exercise.
