For my school work experience I had the amazing opportunity to attend and work with the Great Ormond Street Hospital (GOSH) Young Persons’ Advisory Group for research (YPAG) (Figure 1). The GOSH YPAG is a group of young people aged 10-21 who help clinical researchers to plan and deliver their research. Some YPAG members are former patients at GOSH.
Figure 1: GOSH Young Persons’ Advisory Group. Photo taken before the COVID-19 pandemic.
Photo courtesy of Deirdre Leyden.
I sat in on the virtual YPAG meeting on 28 November 2020 as a facilitator. As a part of this, I had to help prepare and give a presentation for a study about recognising intracranial hypertension in children using handheld optical coherence tomography (RIO Study), led by Dr Sohaib Rufai, NIHR Doctoral Fellow and Specialist Registrar in Ophthalmology at GOSH and the University of Leicester Ulverscroft Eye Unit. Learning about the RIO Study helped me to get an insight into what it is like to be a clinical researcher. As I want to go into science as my career, this really advanced my knowledge in how a research project is carried out. I was given extensive reading material to familiarise myself with the subject and the RIO Study before the GOSH YPAG meeting. As the whole work experience was virtual, this also helped me to improve my knowledge and confidence with virtual meetings, including the use of the whiteboard function and breakout rooms (Figure 2). Throughout my work experience, I had the chance to meet so many incredible people and improve my communication skills.To begin with, I was involved with the planning of the YPAG event.
Figure 2: Example of GOSH Young Persons Advisory Group virtual breakout room using Zoom.
Photo courtesy of Deirdre Leyden.
I took part in several Zoom meetings with Deirdre Leyden, Lead for Patient and Public Involvement and Engagement (PPI E) at GOSH and Dr Rufai. We also exchanged several emails to ensure everything was going to run smoothly. A huge bonus was the fact that Moorfields Eye Hospital EyeYPAG members were invited to join the YPAG event for the RIO Study, meaning we had 25 young people attending in total. All YPAG attendees received Amazon e-vouchers as a thank you.
As mentioned previously, I mainly took part in YPAG for the RIO study. I had to help think of interactive tasks to get the young people engaged with this study. We came up with the idea of a YPAG drawing competition for the logo. First, during the YPAG event, I facilitated discussion of logo ideas and we used the whiteboard function for children to try and draw different ideas – this was a lot of fun. Then, the YPAG members had two weeks to submit their competition entries for a judging panel for the RIO Study. The winner was Oceiah, a member of GOSH YPAG, who drew a happy toucan bird because this is native to Rio de Janeiro in Brazil, with a big eye because the study is about ophthalmology. Oceiah won an Amazon e-voucher as her prize.
Figure 3: Winner of the RIO Study logo competition.
Logo designed by Oceiah, member of GOSH Young Persons’ Advisory Group.
The main purpose of the YPAG meeting is to get young people’s advice on how to keep the children in the RIO Study engaged and happy while their tests are being carried out. I sat in on all the other presentations from other clinical researchers on the GOSH YPAG day and this allowed me to hear about other scientific studies that are currently taking place. I also had the opportunity to speak to many of the young people in the meeting on a one-to-one basis. This was a good experience for me as it allowed me get to know the young people involved in this group. As a facilitator, I had to fulfil the role of leading the conversation. Doing this with people I have never met before was challenging at first but really increased my confidence levels. I thoroughly enjoyed speaking to people similar to my own age, as it allowed me to get to know what career routes other people are interested in following.
“Throughout my work experience, I had the chance to meet so many incredible people and improve my communication skills.”
After the RIO Study overview was presented by Dr Rufai, we went into two breakout rooms. This allowed us to get a more direct level of feedback in smaller groups. I was responsible for taking notes of all the ideas the young people gave. YPAG is a great way to get children’s opinions on studies that involve children. Being a young person myself is why I think it was beneficial to the RIO Study for me to take part in this process. The following week I also took part in the GOSH Parents and Carer Advisory Group. I summarised to the group what the young people had advised and then they offered their opinion based on a parent and carer’s perspective. The RIO Study overview was presented once again and parent / carer opinions were discussed. I learnt so much from this meeting too, as it helped me improve my communication skills with parents and carers.
Overall, I am really pleased I had the opportunity to attend the GOSH YPAG. It was a great experience that has taught me new knowledge and skills for my future career.
Acknowledgements: Dr Sohaib Rufai, NIHR Doctoral Fellow and Specialist Registrar in Ophthalmology at GOSH, for work experience supervision, guidance and encouragement. Deirdre Leyden, Lead for Patient and Public Involvement and Engagement (PPI E) at Great Ormond Street Hospital, London, for guidance, support and encouragement.
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