By Louca-Mai Brady,
We met at the university on Saturday 9th June. When we arrived, the building was still locked as no one had arrived with the keys yet, but luckily we managed to get in in the end 😝
We started the day with a great icebreaker game where we each had to tell two truths and a lie. We then had to try and work out which one was the lie. It was really tricky to guess everyone’s lie! Only three people guessed my lie correctly. The game allowed us to learn a little more about each other while having fun.
Then Terry, who has been working with us on our podcast and film (both coming soon!), updated us on what he’d been doing and took some of us out to interview for the film voiceover. We can’t wait to see the film and hear the podcast!🎤
Next, we had a session with Louca-Mai on what research ethics means and how researchers have to make sure their research doesn’t harm anyone taking part in it.
We talked about what informed consent is and how children need to understand what they are agreeing to when taking part in research. We looked at some examples of consent forms and talked about what we think should be included to make it easier for young people to understand.
An ethics form is needed to have the informed consent of those taking part in the research (research participants) and make sure they understand and agree to the terms (not sharing sensitive information and having the right to leave at any time, etc.). We also focused on developing templates for good information sheets (telling participants why the research is needed, how their responses will be used and how to help the research). We provided similar advice for consent forms.
Some examples of what we think should be included are:
This was my favourite part of the meeting as it was very interesting.
Then we stopped for lunch (yum!) and had delicious pizza, cookies, with some carrots and other healthy food. I like in person meetings better as the food is amazing and we learn a lot more when we are face to face.
At the end of the day, some of us went to work on a podcast with members of other YPAGs, while the others helped Elena plan a project she is doing about food in hospitals. We talked about what might be good or bad food for when someone is ill. Our opinions will help to develop a Food with Care strategy, a food vision for the brand new Cambridge Children’s hospital, which is still in the planning stage (with lots of other involvement from children and families!).
Elena said:
“The session with the YPAG was very insightful. They had some great thoughts around food and its healing potential in hospitals going well beyond nutrition. For instance, they mentioned the importance of accommodating cultural and special diets and that sometimes people need treats in order to keep it balanced.”
It was a great day, and I can’t wait for the next meeting!
Oscar and Matthew
We had our 4th eyeYPAG meeting on Zoom on 19th September.
This film from an adult perspective looks at the practicalities of being involved in clinical research: the time needed, and what payment and expenses you can expect to receive.
This is a group activity that tests young people#’s knowledge about health research, as well as their steadiness of hand!
