To improve your experience on Lilly TrialGuide, please use the latest version of Chrome, Firefox, Safari, or Internet Explorer, with JavaScript enabled.
This website is not optimized for your browser, as configured.
Collaboration

iCAN Research and Advocacy Summit #IRL

iCAN Research and Advocacy Summit #IRL Feature Image

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.

Digital Health
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!

Ethics
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.

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!

Blog post originally appeared on LillyPad.

Tags: iCAN, Pediatric Research,

Recent Articles

WeMustIncreaseDiversityInClinicalTrials FeatureImage 24Feb2021-01

Paving the Way to Better Diversity in Clinical Trials

LTGBlogAuthors LillyGuestAuthorIcon 20July2018
Lilly Guest Author
February 26th, 20218 minute read

To discuss what Lilly is doing to increase diversity in clinical trials, we spoke with two outstanding women who are leading the charge.

ResourcesToHelpAspiringClinicalResearchers FeatureImage 3Feb2021-01

Resources to Help Aspiring Clinical Researchers

Leigh Anne Naas Headshot
Leigh Anne Naas
February 10th, 20214 minute read

If you’re thinking about becoming a clinical researcher, it might be hard to know where to begin. We’ve outlined several resources to help you understand what to expect in a clinical research role.

StudyCoordinatorPatientPartnerThroughClinicalTrials FeatureImage 15Dec2020

Study Coordinator: Patient Partner Through Clinical Trials

LTGBlogAuthors GuestAuthorIcon 20July2018
Guest Author
January 13th, 20217 minute read

Study coordinators are a key part of the clinical trial journey. To learn more about what they do, read our interview with study coordinator, Kelly Roberts.

RandomizationInClinicalTrials FeatureImage 10Dec2020-01

Randomization in Clinical Trials

LTGBlogAuthors LillyGuestAuthorIcon 20July2018
Lilly Guest Author
December 15th, 20206 minute read

What is randomization, and why do we use it in clinical research? Read more to uncover the answers to your questions.

CaringForCaregivers FeatureImage 17Nov2020

Caring for Caregivers

Susan Gilchrist headshot square
Susan Gilchrist
November 18th, 20204 minute read

Read more for services and support groups to make life a bit easier for caregivers - the unsung heroes in the clinical trial process.