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Developing a Cup of Tea: Patient & Researcher Perspective
Author: Mitch Hendry
It’s hard to be interested in something you don’t understand. Remember being a kid at your parents’ dinner parties? I remember being bored to tears by “adult conversations”. If you had asked me back then, I probably would have said that adult conversations were boring. Now I think it would be fairer to say that I didn’t understand what was interesting about them. As you grow up the things that you have interest and experience in change—when you were a kid, maybe you were into toys and games. When you were in your teens, maybe celebrities and dating. As an adult, careers and houses. There are phases we all go through as we get older where our interests change and our experiences change with them.
A lot of us have interest in science (did anyone else want to be an astronaut or doctor when they grew up?) but there is a barrier to gaining scientific knowledge. It takes time and effort to read, re-read, internalize, and understand scientific literature. And it certainly doesn’t help that scientists insist on using words that are harder to read, harder to pronounce, and harder yet to understand. It is easy to feel disempowered when you come up against a piece of scientific literature and realize, after reading the first paragraph, that you have no idea what’s going on. It is easy to feel like you aren’t cut out for this, that you should leave science to people in white coats with degrees and letters like “MD” or “PhD” behind their names. I wanted to write a plain language summary to turn a piece of science into something people could understand, and to encourage others to take on the challenge of deciphering primary literature.
I am somewhat guilty of fulfilling the stereotype of a “science person”. I don’t wear a white coat at my day job or have any letters behind my name, but I do have a degree in genetics. Yet, despite my background in biology, I was way out of my element trying to summarize a functional brain study. CRRAB helped to coordinate two helpful meetings between myself and Dr. Steeves (who insists I call her Jen). Jen was happy to explain everything in the article—I needed clarification on pretty much all of the acronyms. I also needed clarification on what the big finding actually was and how the images of lit-up brains were related to that message. Because I was working full-time and we were only able to chat twice, I did have quite a bit of independent work to do between meetings. Fortunately, the plain language summaries are not on a strict release schedule so I could take my time working through the article and writing my summary. Once we decided to present at a Cup of Tea, I had a number of weeks to prepare a slide deck and practice my presentation. Jen was also happy to review my slides and provide helpful images to explain concepts in the presentation.
All in all, I really enjoyed the project and it was a pleasure to work with Jen! It was exciting to dive into something that I knew almost nothing about and come out of the experience feeling like I could explain it to others. I have also felt for some time that communicating science to the public is an area of great need (in the wake of the COVID-19 pandemic, it is not hard to see that the ability to communicate science effectively has far-reaching consequences!). CRRAB’s plain language summaries are a great way to get 1-on-1 access to a scientist and try your hand at deciphering an article at your own pace.
I am looking forward to working on more projects like this with CRRAB (as a survivor and hopefully as a health professional) in the future!
Author: Dr. Jennifer Steeves
I was very pleased when I heard that one of the papers from my research lab was chosen to be developed into a plain language summary and Cup of Tea presentation. I was even more pleased once I met Mitch, the recent Western University graduate who was presenting the paper to the retinoblastoma community.
I must admit that I felt a bit badly that the paper chosen is actually one of our more difficult papers with less-than-straightforward findings but this was a challenge that Mitch met with ease! Mitch and I had some correspondence over email and then a couple of Zoom meetings. It was really great to hear Mitch’s journey with retinoblastoma and to learn his personal perspective on the research and its results. I appreciate this very much.
The Cup of Tea meeting itself was also an excellent experience and Dr. Krista Kelly, who was the lead author on the paper but is now conducting research in Texas, was able to attend since the event was held virtually. The Cup of Tea and the process around it was a collaborative and collegial experience and I look forward to repeating it with other papers from my lab in future!
