Bridging the Quality Chasm of Congenital Heart Disease Across the Lifespan

 

Ariane Marelli

Centre universitaire de santé McGill (CUSM)

 

Domaine : Services de santé

Programme chercheurs-boursiers cliniciens - Junior 2

Concours 2016-2017

Congenital heart disease (CHD) refers to anomalies of the heart and circulation that occur at birth. We showed that there are over 250,000 people in Canada living with CHD. Advances in medical care have resulted in a rapidly growing population. The number of adults with CHD has more than tripled over the last three decades.

Canada's universal health insurance constitutes a source of pride in Québec. Yet, as patients live longer health care costs increase. For CHD patients, improved survival means living with disease over their lifespan. Investigating this population we have observed important gaps in care, high resource use, avoidable medical complications and that patients and families want to feel more satisfied with their health care experience.

Our research aims to bridge the chasm in quality of care along the age continuum of CHD patients. 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 level that will improve health outcomes of CHD patients. We are proposing electronic health interventions to improve transition from pediatric to adult health care systems, better guideline evidence to improve support for complex clinical decisions in mid-life patients and clinical care pathways to increase accessibility to specialized care for patients who need this the most.

Our work has been used for advocacy in Canada and abroad and helped inform decision-making and resource allocation by organizations such as the Centers for Disease Control and Prevention in the US. We are proposing innovative solutions that will matter to patients and their families and resonate with policy makers.