By Louca-Mai Brady,
We started off our online meeting with some introductions. We had two visitors to this meeting from other organisations (including a visitor from Munich in Germany), who are planning to set up their own similar groups and wanted to know what happens in our meeting and what we talked about during them.
SALIENT Update
We then spoke to Jess from the SALIENT project who gave a bonfire-night themed presentation! Jess talked to us about a ‘stepped wedge randomised controlled trial’, which is a complicated type of research project (she explained to us what it meant!). She then gave us an update on work the team are doing about making frozen ready meal options healthier and told us what researchers had said in response to questions we had asked about the project in the last meeting. We enjoyed hearing about the projects and how they are going.
Jess then talked to us about some new work within the SALIENT project, all about frozen ready meals. This was interesting and we learnt a lot about the changes that were being made to make them healthy. At the end, we played a spot the difference game, looking at replacements for the meat-based meals.
MAPE update
We then spoke to Rosemary about research on helping children with epilepsy to take medicine when they need to. Rosemary gave us an update on this work and again told us how our previous feedback had been used. She showed us information sheets given to children invited to take part in the research, which had been updated based on our comments.
Rosemary then talked to us about how they will report the interviews they are doing, and we discussed the 
difference between anonymisation (when the people being interviewed are called things like ‘Participant 1’ and ‘Participant 2’) and pseudonymisation (when interviewees are identified with a name, but using names that are different to their real names). Rosemary asked us which approach we thought might be better.
We talked about the challenges of both approaches. However, we agreed that pseudonymisation is better as it makes people seem more human. We thought it would be best if participants could choose their own pseudonyms. We thought that if people were able to choose their own name, they could know what contributions they made. Also, we thought that it might also be good to use joint gender names so that there were no assumptions made.
Rosemary said:
“Thank you for giving me the opportunity to present our study again to the YPAG. Their advice has been invaluable for some key design questions and advising on age-appropriate terminology and written information.”
Next meeting: Christmas party!
At the end of the meeting, we talked about the Christmas party☃️🎈 we’re planning for our next meeting. We’ll post about this soon! I am really excited because I haven’t been part of YPAG very long, so I haven’t been to one of these parties yet and I have heard that YPAG parties are amazing.
Hello, I hope you are all well. I am going to tell you about our last meeting which was on the 7th of July two days before my birthday, so I brought in some cake! The first person who came in to speak to us was Frankie, she was researching about Rasmussen’s Encephalitis (it’s very […]
How children, young people and families have improved the design, development and delivery of paediatric research.
This health research-themed puzzle was created by the London YPAG.
