By London YPAG,
Hi, I’m Parveen, a member of the Great Ormond Street Hospital (GOSH) Young Persons’ Advisory Group (YPAG) for research since July 2021 and this is my take on our first meeting of 2025!
We were a Hybrid meeting which enabled 29 members to join in total with 7 of us attending in person. We had four GOSH YPAG Young Facilitators (YF’s) attend in person and three online to support breakout room discussions. We were also joined for the day by the GOSH Director for Research and Innovation, Kiki Syrad who regularly enjoys connecting with the group and can give updates from the GOSH Biomedical Research Centre and the hospital.
Kiki presented GOSH YPAG outstanding attendance and contribution certificates to two of our longstanding members who have been part of the group since 2016 & 2017- amazing commitment!
We often host visitors at our GOSH YPAG meetings and we were pleased to be joined for a third time by a team from a children’s hospital in Munich who are setting up their own YPAG and by a GOSH staff member setting up their own cardiac specific YPAG.
The first meeting of the year for the GOSH YPAG was an exciting and insightful day, with a series of fascinating presentations and discussions on groundbreaking paediatric health research. Here’s a recap of the sessions we attended and contributed to!
CADET – Children’s Adaptive Deep Brain Stimulation for Epilepsy Trial & GOSH YPAG Input into Patient & Carer Device Manual VideosOur day kicked off with an engaging presentation from Rory Piper, Clinical Lecturer in Neurosurgery at UCL Great Ormond Street Institute of Child Health, and the CADET Project Team. Their research focuses on treating childhood epilepsy using deep brain stimulation, a cutting-edge approach that involves implanting electrodes in the brain.
The team sought our input on a series of ‘how-to’ videos designed for patients and caregivers to help them use devices such as the Picon, PicoPC, and recharging hardware. We reviewed the clarity of the instructions, the tone of the content, and the overall user experience. Our goal was to ensure that these videos were easy to understand, user-friendly, and accessible to everyone.
‘Conducting the Cortical Orchestra’: Thalamocortical Networks in DevelopmentNext up, Dr Richard Rosch, NIHR Clinical Lecturer at King’s College London, presented his exciting research proposal focusing on the development of the thalamus, a key brain structure responsible for sensory and motor functions. Dr Rosch’s study plans to analyse data from trials like the CADET trial, using brain scans to understand how the thalamus grows and how faulty connections can impact cognitive functions.
The YPAG was asked for our thoughts on how the findings of this research should be communicated to young people, where they currently receive information about medical research, and how data should be handled and shared in the context of research. It was a thought-provoking discussion about making complex scientific information accessible to younger audiences.
Visit and Lunch at the NIHR GOSH Clinical Research Facility (CRF)One of the highlights of the day was a visit to the NIHR GOSH Clinical Research Facility. This specialised facility hosts ongoing research and clinical trials focused on improving children’s health. We had the chance to explore the space and learn more about the vital work taking place behind the scenes.
The GOSH CRF provides specialist accommodation for children and young people taking part in early-phase and experimental medicine trials. The environment is designed to make patients, and their families feel comfortable and supported, featuring soothing, space-themed artwork and dedicated rooms where parents and carers can relax. It was so inspiring to see the level of care and thoughtfulness that has gone into creating this space for patients and their families.
Co-Producing Principles for Data Linkage with Young PeopleAfter lunch we settled back to learn about the use of administrative data in child health research, focusing on the principles of data security and ethical considerations. Pia Hardelid, Joachim Tan, and Ania Zylbersztejn from GOSH and the BRC discussed how administrative data is used to support large-scale research projects, while also emphasizing the importance of keeping data secure and depersonalised.
We were asked to provide feedback on how data security and the linkage of various datasets should be communicated to young people, ensuring that the ethical implications of using personal data are clear. YPAG members shared their views on how to balance research needs with privacy concerns.
Dr. George Lawson, a Paediatric Registrar specializing in Infectious Diseases, presented a follow-up project focused on detecting antibiotic-resistant bacteria in hospital wastewater. Antibiotic resistance is one of the top global health threats, and Dr. Lawson’s research aims to identify resistant bacteria in hospital wastewater as a preventative measure.
YPAG helped review the research proposal, ensuring it was clear, concise, and well-structured. A key topic of discussion was the ethical implications of testing wastewater without explicit patient consent, and how to balance the need for public health protection with ethical considerations.
Children’s Academic and Health Reports for Sickle Cell Disease in England (CARES)Finally, the CARES research team sought our input on their study, which examines the health, healthcare usage, and academic performance of children with sickle cell disease (SCD). The team asked for feedback on how to design focus groups aimed at understanding the experiences of children living with SCD.
A key challenge discussed was how to engage children of different age groups (6-11 years and 12-17 years) and make the focus groups comfortable and age appropriate. YPAG provided feedback on how to ensure the activities were engaging and would allow children to express their thoughts in a relaxed and open environment.
What a fantastic way to kick off the year! We’re already looking forward to our next meeting and continuing to make a meaningful impact in paediatric health research. Stay tuned for more updates from the YPAG team as we continue to contribute to the future of children’s health!
Parveen
In February 2019, NHS Trusts, researchers and patients across the Kent, Surrey and Sussex region came together to celebrate the excellent health and social care research taking place across the NIHR Clinical Research Network. The awards were presented by Sine Littlewood, head of NIHR CRN business development and marketing, Dr Kate Jones, KSS CRN chief […]
How children, young people and families have improved the design, development and delivery of paediatric research.
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