Sometimes, like a brilliantly colored kite overhead, we spot an idea that we think everyone should see. And it was in this way that we met Erin Moore, the author of Flip 63. During regular care for her son, Erin encountered a real-life pinch point. Her five-year-old son wanted to know more about a procedure but no child-specific educational materials were available to explain it. She thought, but if he’s smart enough to ask the question, shouldn’t he be smart enough to learn the answer? Erin wrote a blog post about kid-centered medical educational materials and then tweeted it out. She knew she was onto something when parents and coworkers—ones she didn’t know personally—started getting in touch. We at Flip the Clinic were similarly inspired by the idea. The blog post below is how Erin’s inspiring Flip idea started. To see how it’s evolved, check out her Flip here and get involved!
If He’s Smart Enough to Ask the Question
Drew has an MRI and CT scan tomorrow. He’s not sick, which is really why we are doing it now.
Talking with his doctor at our last appointment, we decided that it might not be a bad idea to do a CT scan to compare it to his prior CTs scans to see if lung damage is happening. It will inevitably happen in CF, but we hope to prolong the time that we see damage as long as possible.
I agreed to have the MRI done along with the CT scan as long as we didn’t need sedation. After some discussions with the doc and the researchers, everyone agreed to try. With the scan coming up this week, I reviewed the IRB (the document that explains the research, what is happening, the associated risks, etc.) and decided to talk to Drew about it. I also offered him $5 to hold still for the test so we can avoid sedation.
He asked me why he had to have it done and if it was going to hurt, and I tried my best to explain that to him. After our conversation, I emailed the research coordinator and asked if they had materials to explain the IRB to a 5yr old. While they didn’t, she did share some images of the machines that I was able to show Drew to hopefully allay some fears. But it got me thinking about how I wished the IRB was directed to him. I’m fine with a copy for me, explaining things at a different level, but if we could involve patients at a younger age understanding why they participate in this type of thing, what exactly is going to happen, how it will feel and how it will help them, maybe it will give them a deeper understanding of their disease, a deeper confidence in the teams that care for them, a deeper appreciation for the entire system that is in place to keep him well. I felt that if he was smart enough to ask the question then he deserves a smart and honest answer. I would love to work on a project with kids as young as 5 translating overly complicated IRB protocols into common sense, easy to understand documents. Maybe I will 🙂
Stay tuned for results on the MRI/CT study!
Erin is now looking for an illustrator to help with Flip 63: Pairing Children’s Book Illustrators with Evidence. If you can offer design, illustration, or any other support, leave a note in the comments.