Pan-Canadian Organ Donation and Transplantation (ODT) Data and Performance Reporting System Project
Project overview
AVÐÇÇò and Canada Health Infoway (Infoway) are co-leading a multi-year project to develop a modernized pan-Canadian organ donation and transplantation (ODT) data and performance reporting system.
Funded by Health Canada, this project aims to support improvements in ODT access, care and outcomes across Canada through the deployment of technology solutions, system integrations and pan-Canadian data and system-level performance reporting. Project activities and outcomes will be achieved through collaborations with provincial and territorial ministries of health, health organizations, clinicians, researchers, patients, families, donors and the ODT community. The AVÐÇÇò-Infoway ODT Data and Performance Reporting System Project builds on existing foundational ODT work, such as initiatives led by the provinces and territories, and those led by Canadian Blood Services and its ODT Expert Advisory Committee, where applicable.
In fall 2023, AVÐÇÇò launched its newest data holding, the Canadian Organ Donation and Transplantation Data System (CanODT). Work continues to prepare for the receipt of new digital data in the coming year.
Organ donation and transplantation in Canada
- Despite significant advances in ODT practices in Canada, the need for life-saving organ transplants continues to grow and exceed the availability of donated organs across the country.
- In 2023, a total of 3,428 organ transplants were performed in Canada, 3,427 Canadians were on wait-lists to receive a transplant and 214 Canadians died while on the wait-list.Reference1
- Canada’s rate of deceased organ donations lags behind that of other countries, and there remains significant variation across jurisdictions in organ donation rates and access to transplantation.
Project activities and outcomes
AVÐÇÇò and Infoway have committed to achieving the following project activities and outcomes over the multi-year project through extensive consultation and engagement with members of the ODTC DSWG and the AVÐÇÇò-Infoway expert advisory forums.
Indicators and measures performance reporting
Develop pan-Canadian indicators and measures for the new ODT performance reporting tool (AVÐÇÇò)
Data standards
Develop pan-Canadian minimum data sets and data standards for deceased donation, living donation and transplantation (AVÐÇÇò)
Data repository and access
Design, build and deploy a pan-Canadian ODT data repository with data access capability and services for decision-making, policy development, research and innovation (AVÐÇÇò)
Technology solutions
Procure data management systems and integration solutions for deceased donation, living donation and transplantation (Infoway)
Featured material
Organ donation and transplantation data and reporting
This first release, created as part of the AVÐÇÇò-Infoway ODT Data and Performance Reporting System Project, features health system performance indicators, ODT at a glance (an interactive tool) and infographics.
Pan-Canadian Organ Donation and Transplantation Prioritized Indicators
This report presents the list of prioritized ODT indicators and measures for the pan-Canadian data and performance reporting system.
Podcast episode: Organ donation and transplantation in Canada
In this episode of the Canadian Health Information Podcast, we speak with Dr. Joseph Kim and Sandra Holdsworth about ODT in Canada.
Additional material
Summary statistics on organ transplants, wait-lists and donors
Data tables and infographic provide 2023 summary statistics on organ transplants, wait-lists and donors based on aggregate data from organ donation organizations across Canada.
Organ replacement in Canada: CORR annual statistics
Take a closer look at statistics from the Canadian Organ Replacement Register database on dialysis, organ transplantation and donation characteristics, trends and patient outcomes.
Organ transplants in Canada: Donations and need
Visual representation of organ transplants, wait-lists for transplantation and deaths on the wait-list in Canada in 2023.
Data standards
AVÐÇÇò has developed minimum data sets (MDSs) for Deceased Donation (DD), Living Donation (LD) and Transplantation (Tx). These documents are intended to support future system-level reporting of ODT performance indicators and measures.
Partnerships
The AVÐÇÇò-Infoway ODT Data and Performance Reporting System Project is guided by Health Canada’s Organ Donation and Transplantation Collaborative Data System Working Group (ODTC DSWG), co-chaired by Dr. Joseph Kim and Dr. Matthew Weiss. Project activities will also be achieved through extensive consultation and engagement with members of AVÐÇÇò-Infoway expert advisory forums.
Related resources
Contact us
If you have any questions or would like to learn more, please email
Reference
1.
Canadian Institute for Health Information. Organ donation and transplantation data and reporting. Accessed April 23, 2024.
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