Collaborating to Modernize Canada’s Organ Donation and Transplantation Systems

By Mark Nenadovic

Since 1997, through the passing of Bill C-202, the final week of April is recognized as National Organ and Tissue Donation Awareness Week in Canada. It serves to raise awareness about the vital need for organ donors and to encourage all Canadians to register their intent to donate. This initiative was inspired by the tragic death of Stuart Herriot, an Ontario toddler, in 1995. His grief-stricken parents made the selfless decision to donate Stuart’s organs so that four other children could live.

In April 2018, Logan Boulet was one of 16 passengers whose lives tragically ended when the Humboldt Broncos’ team bus collided with a transport truck in Saskatchewan.  Logan’s parents honoured his wishes for organ donation; a noble act that saved the lives of six Canadians and spawned a national movement, Green Shirt Day, to raise awareness and drive registration for organ donation.

Yet despite public awareness initiatives and the altruism of many heartbroken families, approximately 250 Canadians will die each year waiting for transplant surgery because of the persistent scarcity of organ donors.

Information Management for System Improvement and Social Good

Canada’s organ donation and transplantation services are fragmented and unevenly distributed across provinces and territories. Implementation of a pan-Canadian information system for tracking donation and transplant activities was deemed essential by the Organ Donation and Transplantation Collaborative (ODTC), a collaboration between federal, provincial and territorial (FPT) governments and Canadian Blood Services. 

To address this, Health Canada has provided $40.4 million over five years to the Canadian Institute for Health Information (CIHI) and Canada Health Infoway (Infoway). Our two organizations joined forces in 2019 to co-lead a project that will modernize Canada’s ODT data management and performance reporting systems. Working in close collaboration with FPT agencies, this initiative will improve consistency and quality of ODT data across Canada and will expand its use for decision-making. The new system will enable improvements in the supply of solid organs, access to transplantation services, and health outcomes for living donors and patients who receive organ transplants.

Overview of Project Activities and Accomplishments

To date, we have:

  • Approved a strategy and project proposal to guide five years of activities and investments in technologies and related components in ODT system operators’ organizations;
  • Led a procurement exercise that has involved seven provinces: Alberta, Saskatchewan, Manitoba, New Brunswick, Nova Scotia, Prince Edward Island, and Newfoundland and Labrador;
  • Completed the future state business and integration architecture enabling the collection and sharing of ODT data;
  • Created an interoperable technology hub to exchange out-of-province donor records privately and securely;
  • Initiated development of a pan-Canadian organ donation and transplantation data repository and reporting tool set;
  • Created pan-Canadian, standardized, minimum data sets, indicators and measures for deceased organ donation, and transplant and living donation;
  • Completed solution requirements definition for transplant and living donation management solutions to be leveraged in future procurements; and
  • We are continuing to support the procurement, deployment and integration of data management systems and the integration of solutions for provincial health service organizations that focus on deceased donation, living donation and transplantation.

This month as we honour the many gallant Canadians who have created a legacy of life as well as the passionate clinicians who serve in the organ donation and transplantation system, let’s show our appreciation by registering our intent to donate and sharing our wishes with family and friends.

If you’d like to connect with the team leading the Pan-Canadian Organ Donation and Transplantation Data and Performance Reporting System Project, please drop us a note here.

Have a comment about this post? We’d love to hear from you.

About the author
Mark Nenadovic

Mark Nenadovic

Mark Nenadovic is a Senior Director with Canada Health Infoway where his team is focused on collaborating with clinicians, caregivers, industry and government to enable the spread and scale of innovative solutions and services as part of the Organ Donation and Transplantation Collaborative. 

Throughout his career, Mark has worked extensively with hospitals, regional health authorities, provincial and national governments as well as non-government organizations.