Improving Organ Donation and Transplantation Governance to Meet Patient Needs

Illustration showing a kidney

“To increase rates of organ donation, to maximize the numbers of organs transplanted, to ensure transplant patients receive the best possible post-operative care, and most importantly, to improve the actual outcomes for patients, we need transplant teams, hospitals, health authorities, organ donation programs and organizations, and provincial ministries of health to not only learn from one another but collaborate. These are not, for the most part, uniquely clinical or medical questions. They speak to the challenge of how we govern organ donation and transplantation and how we collectively make choices about the organ donation and transplantation system we want.” – A Model for the Pan-Canadian Governance of Organ Donation & Transplantation in Canada


Matthieu Charbonneau, Brooke Campus, Denham McLean, Juli Finlay, Caroline Woodward

Collaborating Researchers
Vanessa Gruben, Alicia Czarnowski, Sarah Lazin

Funded by Health Canada

Although some aspects of Canada’s ODT system perform well, improvements are needed to keep up with a growing and aging population. Routinely, there are over 4000 Canadians waiting for a transplant every year, with many Canadians dying during the waiting period. Yet only a fraction of Canadians are registered as donors.  One of the factors that affects timely and effective organ donation and transplantation is the extent to which governments, health authorities and hospitals work well together and collaborate transparently and effectively.

The long-term goal of the system is to achieve the balance between donated organs and transplant patient needs, but  several challenges exist. ODT governance involves a set of interconnected systems and a complex mix of people and organizations, including patients and their families, clinicians, health system administrators, organ donation organizations, health charities and, ultimately,  Ministers of Health and the public servants who support them. Canada’s system currently lacks the coordination, implementation, funding/assets, and data infrastructure necessary  to be effective and equitable.

Our research team has proposed a new ODT governance structure that will reinforce responsibilities and lines of accountability among stakeholders. This will, in turn, enhance the overall coordination of the system and alleviate some of the downstream challenges and adverse patient impacts. The research team prioritized respecting jurisdictional authority while collaborating on a new accountability framework and collated lessons in governance arrangements from countries with high-performing systems.


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