NETHERLANDS, July, 2019 - Calling up on a wonderful conference in Kansas City, where we had the chance to get to know iCAN (International Children’s Advisory Network) and to learn from and interact with her members, we are now 4500 miles away and back in the Netherlands. It was great to be surrounded by so many people striving for the same goal: EMPOWERMENT of children in healthcare and research. The week started off with a poster session that set the tone for the rest of the week, giving children the voice they deserve! Youth iCAN members presented the activities they had organized as patient advocates, and research that they had been carried out by themselves.
Laura Postma and Malou Luchtenberg were given the opportunity to represent a research team from the Netherlands, supervised by Dr. Els Maeckelberghe (ethicist) and Dr. Eduard Verhagen (pediatrician). Laura was selected to present her poster “Not about us without us: attitudes of researcher and children about the involvement of children as co-researchers in pediatric medical research”, which was a great opportunity to share our findings from the Netherlands, and to get feedback from children all over the world. The young people that Laura spoke with were all very grateful that the involvement of children in research had been addressed from the perspectives of researchers and doctors. They had the idea that researchers and doctors were sometimes unaware of children’s wish of their voices being heard. On top of this helpful feedback, Laura was awarded with the first prize for her poster!
Malou had the chance to give a 50-minute workshop titled “It actually felt like I was a researcher myself: a VIP (very interactive presentation)”. She shared experiences of young people that were involved in the analysis of interviews in which patients and healthy volunteers spoke about their experiences with taking part in medical research. The interactive part that followed got both children and adults moving: as true Dutchies we made everybody walk around (healthy aging is one of our University’s main targets). Everyone did not only move in space; we shared experiences, interacted with each other, and discussed challenges in involving children as co-researchers in pediatric research to move forward in our shared goal to empower young peop
A big thanks to the organizers from Kansas City and all of the iCAN members for being a great inspiration to us. You showed us the true meaning of empowerment, and the importance of bringing our knowledge and experiences together in a network such as iCAN. We are looking forward to further collaborate with you all in the future!
Laura Postma & Malou Luchtenberg
University of Groningen, University Medical Center Groningen, The Netherlands