ODTC Project Snapshot: Improving Engagement and Empowerment of Patients and Families through their Transplant Journey

Improving Engagement and Empowerment of Patients and Families through their Transplant Journey

What is this project about?

Project background

A transplant journey can be a long process that includes consideration of organ donation or transplantation, waiting for a donor or recipient, surgery, rehabilitation, and post-transplant maintenance. Navigating the complexities of the health care system can be challenging for patients. A better understanding of the patient experience is needed to improve services and supports, and to identify how to best involve and empower patients not only through their personal journey, but in contributing to system improvements.


The project will focus on three overarching objectives: 1) improve health services and products for patients on a transplant journey; 2) empower patients to navigate the system across jurisdictions and advocate for their own needs; and 3) develop recommendations for patient-led and patient-focused approaches for renewed and improved ODT health policies and services in Canada.

Overview of activities

  • Conduct an environmental scan and survey to better understand patient experiences with the system, and what currently exists in terms of products and services for patients.
  • Engage and empower patients through the creation of a patient/advocate network and through workshops - to enable involvement in health system priority setting and improvement.
  • Based on patient/advocate input, develop and disseminate a set of recommendations for short- and long-term actions to improve patient experience of the process.

How will the project improve the organ donation and transplantation system in Canada?

The project will contribute to:

  • Promoting the involvement of patients in the development of services and supports aimed at improving their experience with the ODT system.
  • Providing patients with the tools and opportunities to advocate for their needs, and to contribute to actions aimed at system improvement.
  • Improving the accessibility, quality, responsiveness, accountability and sustainability of the health care system in order to meet patient needs.

The project leads

The project is led by the Kidney Foundation of Canada.

Lydia Lauder, National Director, Programs and Public Policy

Carrie Thibodeau, Patient and Advocate Advisory Committee (PAAC) Project Lead

“With the ever-growing waitlist and increasing complexity of our transplant population, it is vital that we develop a pan-Canadian organ donation and transplantation system that is responsive to the diverse needs of our patients,” says Kristi Coldwell, transplant recipient and PAAC co-chair. “Recognizing the challenges inherent to transplantation, we endeavour, through this project, to empower patients at all stages of the transplant journey. We are grateful to Health Canada for funding this important project and embracing the power of lived experiences to improve the overall organ donation and transplant journey for patients and families.”




The Organ Donation and Transplantation Collaborative is an initiative led by Health Canada with provinces and territories (except Québec), Canadian Blood Services, patients, families, clinicians and researchers. Funded by Health Canada, the project Improving Engagement and Empowerment of Patients and Families through their Transplant Journey contributes to the Collaborative’s vision to achieve organ donation and transplantation system improvements that result in better patient outcomes and an increase in the number and quality of successful transplantations. For more information, please consult the Organ Donation and Transplantation Collaborative (the Collaborative) website: https://tinyurl.com/ODTCollaborative.