A network of exchange: Towards the empowerment of children in medical research

Pediatric research is needed to expand knowledge about diseases and to improve treatment options. But how could we best do that? In this qualitative research we aimed to find out what children themselves considered important when they participate in research. Why do they decide to take part, or why not? What is the role of their doctor? We interviewed children about their experiences with taking part in research. Other children became our co-researchers to strengthen our analysis of the interviews.

Children told us that researchers should listen to them more closely. They explained that they participate in research to help other children in the future, they hope for improvement of their own situation, and they want to help their doctor. But they do want to be involved in the decision-making. To that end, research should be adjusted to their individual situation, and researcher should take into account their illness and research experience, information needs, and the support from others such as their parents and doctors.

We advocate the innovative notion of involving patients and children from the general public in medical research as co-researchers. We challenge clinical researchers to tailor each study towards children’s personal needs and wishes, and to make research outcomes more relevant to them. Specific attention is required to increase awareness among children from the general public of the need for pediatric research. Involving and engaging children in research will decrease the gap between academia and society.