In Canada, the economic burden due to disease and injury is estimated at nearly $185 billion. However, this amount does not take into account all the costs borne by Canadians. This is particularly the case for children with a chronic disease and their families. At risk of incurring catastrophic costs, up to 30% of families are carrying this unfair economic burden. Currently, there is a lack of evidence-based research to accurately identify, measure, value and interpret these costs. Understanding these costs in different children's diseases, contexts and periods of their disease trajectories is essential to create new solutions in the delivery of child healthcare. One of these solutions is to create new programs with children that are delivered over the Internet or mobile devices (otherwise referred to as eHealth innovations). eHealth innovations may improve children's health and quality of life while reducing the costs linked to the delivery of healthcare.
My training allows me to render visible the hidden costs of children's rare chronic diseases. In my research, I include two childhood populations: (1) children with cancer: a well-researched and life-threatening disease; and (2) children with "brittle bone" disease: an under-researched and genetic disease that causes bones to break easily. I have organized my research program for 2019-2023 around 2 main themes: (1) Measuring the costs of childhood disease in the family; and (2) Creating eHealth innovations to optimize the delivery of child healthcare services. My research approach ensures children and their families play a central role in advising the research team, and in helping to share the knowledge and to offer solutions. My research will ensure our healthcare system does not impose an unfair burden on children and their families. It will also ensure our healthcare system implements programs and policies that optimize benefits for children and their families.