Every year, many Canadians receive life-saving organ transplants, while thousands still wait, and hundreds die because not enough organs are available. Despite significant progress in organ donation rates, Canada is still unable to meet the needs of all patients waiting for an organ. With 3,777 people in Canada waiting for a transplant as of December 2022, and only a fraction of Canadians registered as donors—the need for donors is critical.
Today, during Living Donation Week, the Honourable Mark Holland, Minister of Health, announced key milestones achieved through the Pan-Canadian Data and Performance Reporting System for Organ Donation and Transplantation (ODT) initiative that will help Canada become a world leader with respect to ODT services.
Many of Canada’s ODT service providers are using old technology to manage their activities – they are still reliant on paper-based filings and using faxes and telephones to communicate with other providers and hospitals. The Canadian Institute for Health Information (CIHI) and Canada Health Infoway (Infoway) have collectively received $40.4 million over five years in funding, to advance the Canadian ODT health system with modern data technology.
As of September 2023, this initiative has made significant progress, including:
- The development and launch of a digital tool that connects the organ donation organizations in British Columbia, Ontario and Quebec to one another to better share available organs from deceased individuals, which helps reduce the number of missed organ donation opportunities for those waiting for a transplant;
- Collaboration with these provinces to start off the integration of the ODT systems, some of which serve the three territories, in Alberta, Saskatchewan, Manitoba, Nova Scotia, New Brunswick, Prince Edward Island as well as Newfoundland and Labrador to ensure that every Canadian, regardless of where they live, all have access to the same advanced care when it comes to accessing organs from deceased individuals;
- The development of a national data standards for deceased donation, transplantation and living donation that will be embedded in digital solutions, to collect high-quality, timely and comparable data to better understand how the health care system is performing;
This project will help ensure fewer missed organ donation opportunities, which will reduce the number of Canadians who die waiting for an organ. This project also enables technological improvements which will, in turn, result in better system management of the supply of organs, facilitate the handling of increased donor volume and organ matching, as well as make it easier for provinces and territories to share organs with one another.
By investing in projects like this, the Government of Canada is able to leverage key partnerships, including with patients and patient-based organizations, to improve our health care system and ensure that Canadians have timely and effective access to quality ODT services wherever they live across the country.
“Organ donation saves lives and there is a critical need for more organ donors in Canada. Modernizing the pan-Canadian data and performance reporting system for organ donation and transplantation supports better decision-making, and improves overall access, efficiency and outcomes for patients across the country. These project milestones demonstrate we are moving in the right direction to increase the number and quality of successful transplantations across the country.”
The Honourable Mark Holland
Minister of Health
“High-quality data is the foundation of well-functioning health systems, and we welcome these investments. We are proud to work in partnership with Infoway to advance this work on behalf of Canadians, bringing our expertise in data standards, measurement and reporting to complement Canada Health Infoway’s capabilities in digital health solution and integration.”
President and CEO, Canadian Institute for Health Information (CIHI)
“Organ donation and transplantation programs in many parts of Canada still rely on outdated, fragmented, paper-based approaches to managing patient data. Infoway is proud to be working together with the Canadian Institute for Health Information to implement modern, pan-Canadian, interoperable digital solutions that will improve efficiencies, ultimately helping to increase organ donor volumes, reduce missed organ donation opportunities, and improve transplant recipient outcomes.”
President and CEO, Canada Health Infoway (Infoway)
“Working in close collaboration with federal, provincial and territorial agencies, this initiative will improve consistency and quality of ODT data across Canada and will expand its use for decision-making. The new data and reporting systems will enable improvements in the supply of solid organs, access to transplantation services, and health outcomes for transplant patients and living donors.”
Dr. Joseph Kim
Director, Kidney Transplant Program, Toronto General Hospital; and Co-Chair, Health Canada’s ODT Collaborative Data System Working Group
- A total of 2,936 solid organ transplants – such as kidney, heart, lung, liver, etc. – were performed in Canada in 2022. This is an increase of 6.8% compared to 2021 and a 31.4% increase compared to 10 years ago. As of December 31, 2022, a total of 3,777 Canadians were on wait lists to receive a transplant.
- Since 2018, Health Canada has been convening an initiative called the ODT Collaborative (the Collaborative) with provinces and territories (Quebec maintains observer status), Canadian Blood Services, and many additional stakeholders including patients, clinicians and researchers.
- The Collaborative’s vision is to achieve ODT improvements that result in better patient outcomes and an increase in the number and quality of successful transplantations.
- Through the Collaborative, Health Canada supports targeted projects to address persistent gaps in the ODT system. These projects are working towards a higher-performing system and improved equity of access in living and deceased ODT.