By Jacq Miller,
At the start of the meeting, we played a fun game of ‘would you rather’ in the form of a Zoom poll. After that, we sang a heart-warming “happy birthday” to those who have a birthday since our last meeting.
Then, Louca-Mai updated us on the radio interview she and some group members did for the Bloomsbury Festival talking about the work they have been doing with the Moorfields Biomedical Research Centre. You can listen to the interview online here.
Shortly after, we were introduced to Lucie Teoh who is a researcher from the UCL Great Ormond Street Institute of Child Health. We went through the privacy notice for her project and made some improvements that would make it more understandable for unprofessional parents and kids.
I really enjoyed this part because I, like the others, felt very included.
I asked the group for their feedback and thoughts on our study privacy notice (a document that gives you details on an activity that collects data on individuals) in order to make it child-friendly and accessible for children and young people with visual impairment.
Eye-YPAG members gave overall as well as specific feedback on how to improve the accessibility of the privacy notice, for example adding colour to certain sections and providing a legend for key words. I was very impressed by the level of detail in which the group gave feedback which was immensely helpful. I am very grateful for their input into the document which will make it easier to read for other children and young people with impaired vision who want to learn about the data used in our study.
After the break, Julia Smith joined us to talk about her plans for research on how babies and young children with vision problems learn to use their hands. She wanted us to get involved and asked us for feedback.
We thought that it was important to get lots of people involved like parents and carers. We also said that it is important for the parents to understand the projects and its benefits otherwise they may be unwilling to participate.
Introducing the idea in a simpler way would help them understand better and let them know that their child wont be harmed in any way.
We also suggested having a way to track progress which could be available to both doctors/researcher and parent. Julia said:
This was my first time attending a YPAG meeting and it was fantastic to work with the young people. Their advice has helped me to think about the way that I write my research proposal and I will be changing some aspects of it. This was such a positive experience and I am keen to continue working with them during the project, should my application be successful.
This was a great session and thanks for reading my blog.