Involving patients in our clinical trials is of utmost importance to us. Penta is dedicated to ensuring that the young people in our trials are included at various stages of the research process. In late April 2022, Mercy Shibemba, one of our PPI experts, sat down with two members of our Youth Trials Board (YTB) to talk about the work that they do and what it’s like to participate in clinical trials as young people living with HIV.
What do you do as part of the Youth Trials Board?
“A few weeks ago, me and a couple of other young people went on a training with the MRC CTU. The researchers had to step down from professionalism and explain what they do in a simple way. In one activity, they had to simplify some statistics for us. I think they found it quite interesting although some of them struggled a little because they weren’t used to using simple words. It was a good experience.”
You asked them about dolutegravir and pharmacokinetics and all of these things that sound like big concepts but are part of our daily lives. How did it feel to speak to the people that work on these trials from your perspective as “this is my lived experience”?
“It was really fun, because this time we finally got to see what happens behind the scenes. So, it was really interesting, and it was nice seeing the people that basically helped us get to the point where we at are now, and a wall broke down, it was a nice experience.”
So my next question is why is the work that you and the other young people do as part of YTB so important? Why is it needed?
“I think it’s really important because many young people in clinical trials don’t know that researchers care about them. So, it’s a good way for us to come together and share what we’ve done with the researchers and help them realize that they’re cared about.”
We recently had a look at a Patient Information sheet. Can we talk a bit about how you felt? I remember both of you saying you wish you had something you could understand rather than something adults knew that you couldn’t understand
“I read about a sentence and then I just couldn’t do anymore, it made no sense. In clinical trials we sign over the rights to our information and I feel we need to understand it. It should be something simpler, with a few words in a context we can understand.”
“I feel like I got tricked, because it’s full of words we can’t even understand. I feel like if it’s given to us, it’s given to us to read. So it should be simpler.”
So the next question is about looking to the future. Based on your experiences and what you’ve learnt, how would you like young people to be included moving forward?
“I think one of the main things is to keep involving young people so we can share our perspective. It’s nice that researchers come and explain to young people what’s going on and the young people tell the researchers what’s going on in their lives as well.”
“I think it would be nice if us as young people involved in trials got regular updates. Just being able to have the results as a child would make you feel better and make you feel more included in the process.”
The work that we’ve done together on the youth trials board means that we’ve been able to simplify those messages. One of the things that has really blown me away while working with the Youth Trial Boards is how many times you all ask about feedback and making sure you get that loop of updates about how your voices and opinions influence trials and just my encouragement to everyone working in with children in clinical trials not to forget to update us because we always want to know what is going on.
Visit our Patient Involvement page to learn more about how Penta is engaging with young people in clinical trials