Editor's note: I'm excited to bring this blog to you in collaboration with my colleague Mary Short, a Research Advisor for Pediatric Capabilities and co-chair of the Pediatric Steering Committee at Lilly.
There are no voices too young to make a positive impact on clinical research. That's why attending the annual iCAN Research & Advocacy Summit has been a highlight of our summer for the past two years. iCAN Research is a global consortium of Youth Advisory Groups (YAGs) working to provide a voice for children and families in pediatric medicine, research and innovation. The annual summit brings people of diverse ages, global perspectives and health care experience levels together for a week under one roof—this year in Edinburgh, Scotland.
Our time spent at the summit was full of interesting, innovative and thought-inspiring presentations led by youth advisers, clinicians and industry leaders. Here, we spotlight just a few of the themes that emerged during the event.
Apps. In one word, this is how we would summarize the clinical research presentations led by the youth leaders. At the start of the week-long summit, each team of YAGs was given an assignment to design a clinical trial. With an assigned condition, such as psoriasis or Crohn's disease, and just a few key details to get them started, they were instructed to determine the trial design, dosing schedule and patient information sheet. Though it wasn't a requirement of the exercise, nearly every team assumed their study would have an app to help with solutions like better managing study visit appointments or serving as an e-diary. The industry leaders in the room considered the tension between the relatively slow research cycle compared with the fast pace of advancing digital health technology and wondered about these digital natives who expect what we consider cutting-edge to be a basic offering. Digital health in clinical research is both a challenge and an opportunity!
A hot topic, and rightfully so, during the summit was ethics. Dr. Bob Phillips (Clinical Academic at CRD and Honorary Consultant in Paediatric/Teenage-Young Adult Oncology at Leeds Children’s Hospital) made the ethical principles come to life by linking important questions to unique and funny research examples to determine if the research was ethical. For example, to demonstrate selection bias, he displayed an image of a cat then asked two attendees if they owned a cat. Both did, and Dr. Phillips proclaimed therefore that everyone owned a cat. He then asked all attendees if they had a pet cat. As attendees raised their hands in response, he adjusted his assumption to say that 50% of all people owned a cat. That interaction led to a discussion of representative samples and the ability (or not) to generalize research findings. An image of a hedgehog as “road kill” was used to pose questions related to trial risk and if the use of placebo was ethical. His presentation had everyone laughing but also made a complicated and rather serious topic understandable and memorable. Attendees representing industry and academia agreed that this was the most fun and informative ethics presentation they’ve attended.
Connections and Community #IRL
The global nature of the iCAN community often means that iCAN members and supporters meet each other in real life (#IRL) for the first time at the annual summit. We personally had a few #IRL moments with some of our digital friends, but we also saw others having this same experience.
It was particularly heartwarming to see the outpouring of love and support for an iCAN youth member who wasn't able to travel to the summit. Whether near or far, iCAN is truly an inclusive community that values all voices.
An @iCANResearch member couldn't travel to #iCANSummit2018, but that didn't stop attendees from sending her love and get well messages during the event—truly an inclusive community! pic.twitter.com/XDA538iImW— Lilly Trials (@LillyTrials) July 12, 2018
We want to thank iCAN Research and all the youth advisors and family members who made this year's summit so powerful—we certainly have a lot to think about and are looking forward to next year's event in Kansas City!
Summits are the best way for iCAN youths to learn from one another and from mentors for 1 special week! We head to Kansas City, Missouri in 2019 to partner with the staff at Children’s Mercy Hospital! #iCANSummit2019 #keepitmoving pic.twitter.com/a67qi6WLVB— iCAN Research (@iCANResearch) July 14, 2018