Improving Engagement and Empowering Patients on Their Transplant Journey
Navigating the organ donation and transplantation (ODT) system in Canada can be complex and confusing for people on a transplant journey. This qualitative study embraces the power of lived experience to guide and inform a truly patient-driven project in which research priorities have been defined by patients, families and donors. The online survey and focus groups central to the project were co-designed with patient research partners using an extensive iterative approach. Engaging patients from across Canada at every step of the research process is yielding a better understanding of the lived experiences of those on a transplant journey and will be instrumental in developing patient-led and patient-focused recommendations for long term improvements to the ODT system.
Carrie Thibodeau’s bio
Carrie Thibodeau is serving as project lead for a qualitative study called Improving Engagement and EmpoweringPatients on their Transplant Journey. Her educational background is in the fields of applied health sciences and communications, and the focus of her professional career has been on kidney health.
She has worked closely with both patients and medical professionals for many years, and she has collaborated on multiple projects with the Kidney Foundation of Canada. On a personal level, Carrie has a close family connection to the renal and transplant communities. Her youngest uncle (and de facto big brother) is a three-time kidney transplant recipient and is now undergoing hemodialysis. His experiences have had a profound impact on Carrie both personally and professionally. This project has been an opportunity to be part of a team responsible for ensuring that patients’ lived experiences are central to the decisions being made about how best to manage organ donation and transplantation in Canada.
Kristi Coldwell’s bio
Kristi Coldwell is the Senior Advisor for Transplant Research Advocacy at the Transplant Research Foundation of BC. Having undergone a heart transplant as a teenager due to congenital heart disease, Kristi is acutely aware of the role research plays in improving outcomes and enhancing quality of life. She believes Patient and Family Partners have an important role in shaping and informing research to ensure it is meaningful and accountable to all stakeholders. She also serves as the co-chair for the Patient Advocate Advisory Committee of the Organ Donation and Transplant (ODT) Collaborative, a Health Canada initiative that brings together key stakeholders in Canada’s ODT system.