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How do we improve the organ donation and transplantation system in Canada?

Navigating the health care system can be challenging and confusing when you're feeling well. For people on a transplant journey, it can be even more difficult.

That's why we asked over 1,000 transplant recipients, caregivers and living donors from across Canada to share their lived experience of the organ donation and transplantation (ODT) system through an online survey and a set of focus groups.

What did we learn about the transplant journey?

While every person’s journey is different, we found that there were some common themes.  The transplant patients, living donors and caregivers who participated shared important insights into the transplant journey, including these:

- “[...] mental support and financial support and emotional support, they all go hand in hand.”

- “I had to do fundraising to stay close to the hospital for 3 months post-transplant. I also owned a home and had a family that I had to maintain. The financial obligations are astronomical and I had to declare bankruptcy not long after my transplant.” 

- “[...] mental health services before and after transplant. There’s so little help and what there is costs too much for those of us who are on or have been on disability because of our illness. Help is completely inaccessible for many of us.” 

- “[...] I think this whole journey was rougher on the people around me than it was on me.” 

- “I didn’t actually have a contact person to ask if I had questions about healing. When I called my pre-transplant rep she told me to call post-transplant and I had no idea who to ask for there.”

What are the recommendations from patients, caregivers, and living donors for improving the ODT system in Canada?

People with lived experience of the organ donation and transplantation system had three main recommendations for improving the transplant journey:

  1. Prioritize mental health care
  2. Expand access to resources and services
  3. Improve coordination and continuity of care

These recommendations represent the most common and pressing needs we heard from over 1000 survey and focus group participants from across Canada.

What’s next?

The opportunities and solutions listed above have been proposed by transplant patients, living donors, and caregivers. It’s important that they be heard and understood, and then implemented. 

We’ve started by presenting the findings at multiple levels of government, and we’re sharing our results with the transplant community and the public at large. You can help by sharing this important work with people you know. 

Click here for a summary of the project results to share
Click here to download a copy of the full report

The research team would like to thank everyone in the transplant community who generously contributed their time and expertise at every phase of this project.  We value and appreciate the contributions of each and every patient partner, survey respondent, and focus group member who took part.

  • Personal Stories

    Karen, a living kidney donor, talks about her family's transplant experiences

    Suraj shares his pre-transplant experience


    Suraj shares his post-transplant experience


    Sandra H., liver recipient in February 1997, shares her experience

    Sandra H. liver recipient
    My transplant journey began in April 1992. After several years of not feeling well, a new doctor ran every blood test that she thought might lead to a diagnosis. Those results came back showing high liver numbers and I was referred to the Toronto General Hospital Liver Disease Clinic....

    Read Sandra's story (.pdf)

  • About the Project
    This survey is part of a project by the Patient/Advocate Advisory Committee (PAAC) of the Organ Donation and Transplant Collaborative (ODTC). Coordination and support for the committee and the project is being led by The Kidney Foundation of Canada.
  • About the Patient/Advocate Advisory Committee (PAAC)
    The Patient/Advocate Advisory Committee is made up of a dedicated group of patients and caregivers who want to help make sure the organ donation and transplantation system meets the needs of the people who depend on it most. The PAAC seeks to support patient and advocate voices, provide representation and improve patients’ experiences as they navigate the organ donation and transplantation system in Canada.
  • About the Organ Donation and Transplantation Collaborative (ODTC)
    Since 2018, Health Canada has been leading an initiative called the Organ Donation and Transplantation Collaborative (The Collaborative) with provinces and territories (except Québec), Canadian Blood Services (CBS), patients, families, clinical and administrative stakeholders and researchers. Working together, we will continue to improve our system and ensure that Canadians have timely and effective access to quality donation and transplantation services.  The Collaborative’s goal is to achieve organ donation improvements that result in better patient outcomes and an increase in the number and quality of successful transplantations.

    This project is funded by Health Canada as part of the Organ Donation and Transplantation Collaborative (The Collaborative). For more info, click here. 

Sponsors and Supporters

In addition to The Kidney Foundation of Canada, the following organizations are sponsors and supporters of the project.