iCAN Research and Advocacy Summit #IRL

The annual iCAN Research & Advocacy Summit reminds us of the invaluable impact of youth involvement in clinical research. iCAN, the International Children’s Advisory Network, is a global consortium of Youth Advisory Groups working to provide a voice for children and families in pediatric medicine, research and innovation. Their annual summit brings people of different ages, levels of health care experience and global perspectives together for a week under one roof. The summit has taken place in many different locations throughout the years, including Edinburgh, Scotland and La Jolla, California.

Time spent at the summit is 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 were explored at past events.

Apps. In one word, this is how we would summarize clinical research presentations led by the youth leaders. At the start of the 2018 summit, the Youth Advisory Groups were 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 a summit in Edinburgh was ethics. Dr. Bob Phillips (Clinical Academic at CRD and Honorary Consultant in Pediatric/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.

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We want to ensure that children and young people have the best experience possible when thinking about taking part in clinical trials and when participating. This means we do all we can to make sure they are well supported, their questions and any concerns are heard and addressed, and the materials we create make sense and are engaging. As part of the summit in La Jolla, California, we were very fortunate to have the opportunity to run a workshop with some enthusiastic children and young people. The aim was to understand more about what this group really want to see, hear, and know about clinical trials. The session was so much fun, and we are so grateful to the young people and their guardians for taking the time to provide incredibly valuable insights and feedback.

The global nature of the iCAN community often means that iCAN members and supporters have the opportunity to meet each other in real life (#IRL) 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.

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Whether near or far, iCAN is truly an inclusive community that values all voices. An example of this is when there was an outpouring of love and support for an iCAN youth member who wasn't able to travel to a summit back in 2018.

Embedded content: https://twitter.com/LillyTrials/status/1017395920986628097

We want to thank iCAN Research and all the youth advisors and family members who make the summit so powerful—it always leaves us with a lot to think about, and we look forward to the event each year!

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