April 1, 2020 - ANN ARBOR, MI - In a global effort to mitigate the spread of Covid-19, chapters of the International Children's Advisory Network (iCAN) are refocusing their team efforts through the use of multiple technological platforms. Understanding that many of the iCAN Youth Members live with rare, chronic, and complicated conditions, iCAN chapter leaders are viewing the current 'stay-at-home' mandate around the world as a way to rethink the ability to include the patient voice throughout clinical research, science, technology, and the development of new medicines and medical devices.
KIDS Albania Chapter Leader, Ornella Cullufe explained, "We continue to have our meetings in virtual way via Zoom". Sharing pictures of her youth members during their March, 2020 remote meeting, it is clear that KIDS Albania Youth Members continue to be strong supporters of the many pediatric iniatives throughout their local community, as well as, throughout the iCAN organization.
Using virtual connections are not new to iCAN as often, kids abruptly find themselves in-patient and the recipients of continued medical care for their own conditions. One chapter that has adapted to ensure that their members are able to stay connected is the KIDS Michigan chapter, based out of C.S. Mott Children's Hospital located at the University of Michigan. Improvising as a way to stay connected, KIDS Michigan Chapter Leader, Nancy Keumin created a simple virtual connection for kids using an online phone link. Sending slides ahead of time, kids can dial in using their own cell phone from their hospital bed or at home, and participate as they would in-person.
In 2019, iCAN also created the first iCAN KIDS Virtual Chapter as a way to connect with kids that may live to far away to attend local chapter meetings. The first youth member to be involved virtually was 10-year old Logan H. from San Antonio, Texas. As a young boy, Logan was diagnosed with Nephrotic Syndrome and Juvenile Psoriatic Arthritis. While iCAN has a chapter in Texas, KIDS Houston, the three hour commute was not feasible. By forming the iCAN KIDS Virtual Chapter, Logan could easily participate throughout the organization. As luck would have it, the U.S. Food and Drug Administration (FDA) reached out to connect with children living with rare diagnosis to better understand 'Clinical Trial Endpoints for Rare Diseases With a Focus on Pediatric Patient Perspectives' during their November 11th event titled "Advancing the Development of Pediatric Therapeutics (ADEPT 6) Workshop." Logan was excited to continue the opportunities of sharing his expertise as a patient and provided wonderful insight to the FDA and attending audience through his personal experiences.
Furthermore, during the coronavirus pandemic, iCAN has offered to connect virtually to all chapter youth members and kids that may like to begin sharing their voice. The KIDS Virtual Chapter sign up portal may be found HERE. Once signed up to participate, youth may begin sharing their voice through online focus groups, surveys, and educational activities designed to help supporting pediatric research and medicine around the world. New activities are added weekly and there is no shortage of exciting opportunities to help others.