CHOC Launches Local Chapter of Youth Advocacy Consortium

CHOC, in partnership with Rady Children’s Hospital, is thrilled to have launched a local chapter of an international consortium of advisory groups designed to give children and families a voice in medicine, research and innovation.

The International Children’s Advisory Network, or ICAN, aims to help children communicate effectively with people, industry leaders and government agencies to make a difference in pediatric healthcare.

Participants are typically between the ages of 8 to 18 years, beyond which members can go on to join the ICAN Young Adult Professionals and evolve into leadership roles. While some members may not have diagnosed medical conditions, many participants are medically complex or live with a chronic or rare disease, which gives their participation particular meaning.

ICAN participants share their ideas and concerns through research, surveys and activities. Additionally, local chapters may host speakers on varying topics, plan visits to industry or other healthcare institutions, or participate in volunteer projects.

ICAN members can also join the monthly “Ask the Experts” sessions, where they can seek answers about their care or future careers from ICAN experts such as Dr. Anthony Chang, CHOC’s chief intelligence and innovation officer, who serves on ICAN’s Advisory Board.

“Sometimes pediatric patients may feel unheard, powerless or isolated,” Dr. Chang says. “ICAN helps these patients find their voice, learn leadership skills, make friends and give back to their home hospitals.”

ICAN’s annual summit is a highlight for participants. After two years of virtual conferences, the 2022 ICAN Annual Summit will be held this summer in Lyon, France. Here, members will participate in focus groups to help shape clinical trials, give feedback on new pediatric innovations, engage in discussions with global thought leaders, and connect with other patients from around the world to share their experiences.

Each ICAN chapter has about 10 to 15 participants who  meet virtually monthly. Currently, the CHOC-Rady chapter has eight members. Patients and families who are interested in participating should contact Monica Suesberry at monica.suesberry@choc.org.

CHOC’s local ICAN chapter is among the many projects and efforts underway by the Sharon Disney Lund Medical Intelligence and Innovation Institute (MI3) at CHOC. A unique and first-of-its kind institute, MI3 creates, focuses and executes projects around intelligence and innovation in pediatric medicine.

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