Children with medical conditions and their caregivers deserve to have a voice into improving their interactions within the medical landscape. Too often, research studies, medical procedures, and pediatric innovations are created without talking to children and understanding their point of view. Does this protocol require too many blood draws or visits to the clinic? Is this pamphlet, consent form, or other material understandable to children and families? Is the wording appropriate, or could it be better? Am I measuring endpoints that children and their caregivers actually care about? How can we make this healthcare experience better for the young people who will be its end users?
The International Children's Advisory Network (iCAN) aims to improve pediatric health, medicine, research, and innovation by providing a strong, international voice for children and their families. We connect doctors, nurses, researchers, and other professionals with children who are experts at pediatric research, who are patients themselves, and/or who have an interest in science or medicine. There are over 300 children and young people in our network, and they have spoken at conferences, conducted surveys, written abstracts, presented posters, sat on panels, given speeches, provided feedback to study designs and materials, and much more.