Grant: Foundation Grant

Congenital heart diseases (CHD) are anomalies of the heart and circulation that occur at birth. We have shown that there are over 250,000 people in Canada living with CHD. The number of adults with CHD has more than tripled over the last three decades. Canada's universal health insurance constitutes a great source of pride for our nation. Yet, as patients live longer, health care costs increase. For a growing group of Canadians such as CHD patients, improved survival means living with disease over their lifespan. While investigating this population, we have observed important gaps in care, high resource use and avoidable medical complications. We also observed that patients and families want to feel more satisfied with their health care experience. Our research aims to improve quality of care for CHD patients using interventions aimed at our health system. Our goal is to lessen barriers related to delivery of health services, which prevent Canadians with CHD from having optimal health outcomes. Our research teams include patients, researchers, knowledge users and industry partners in Canada and the US. We are asking for public research funds to advance knowledge and create interventions at the patient, provider and health system levels that will improve health outcomes for CHD patients. We are proposing clinical care pathways to increase accessibility to specialized care for patients who need this the most, better guideline evidence to improve support for complex clinical decisions in mid-life patients, and electronic health interventions to improve transition from the pediatric to adult health care systems. Our work has been used for advocacy in Canada and abroad and helped inform decision-making and resource allocation by organizations such as the US Centers for Disease Control and Prevention. We are proposing innovative solutions that will matter to patients and their families and resonate with policy makers.