News

Through its commitments made via the Organ Donation and Transplantation Collaborative (ODTC), Health Canada will be investing close to $250,000 in a project called Improving Engagement and Empowering Patients Through Their Transplant Journey. 

As part of the ODTC, The Kidney Foundation, together with the Patient/Advocacy Advisory Committee (PAAC), is leading the two-year research project designed to evaluate patient-lived experiences of organ donation and transplantation to improve informational support services and products needed for patients’ transplant journeys.

There are three overarching goals: 

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 patient-led and patient-focused approaches for renewed and improved ODT health policies and services in Canada.

“We're very pleased to take a lead role in this very important project,” states Kidney Foundation National Executive Director Elizabeth Myles. “Tapping into the lived experiences of transplant patients is not only key to improving processes but also on improving transplant outcomes.”

The project is a key component of the PAAC, a larger ODTC initiative that seeks to support patients and advocate voices, provide representation across the ODTC, and improve patients’ experiences of the organ donation and transplantation system in Canada.

“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.”  

Working closely with patient/advocate and service delivery organizations, as well as other partners, The Kidney Foundation will use the resulting data to lead the development of a report with recommendations that are patient-led and patient-focussed for longer-term and sustainable consistency of services and products and for organ donation and transplantation system improvements across Canada.  The findings of the project will influence and support policy makers, service providers and stakeholders in improving accessibility, responsiveness, quality, sustainability and accountability of the health care system.