Transplantation is often the preferred treatment for people with advanced chronic kidney disease.
However, patients and donors considering this option do not always receive the information they need to make informed decisions.
To address this gap, a Can-SOLVE CKD research project has launched the Transplant Ambassador Program (TAP), a patient-led initiative that has made great strides in disseminating valuable information about transplantation to both patients and health professionals in renal units across Ontario.
Along with creating educational materials, Transplant Ambassadors make in-person appearances in kidney clinics. Each TAP team member has personal experience with kidney transplantation, either as a donor or recipient. If patients or health professionals in the clinic have questions about transplantation, the TAP patient partners are more than happy to share their real-world experience, answer questions, and dispel myths.
“We want to [break down] the barriers to living donation and we also want to provide information and support to patients along their journey,” explains Marian Reich, a kidney donor who is a Transplant Ambassador in Richmond Hill, Ontario. “People often feel better about transplantation after talking to someone who has done it. They don’t have to feel as afraid, they don’t have to feel as alone. And that’s the rewarding thing – when you can make a difference in someone’s life.”
Based on her experience, Reich has found this approach helpful for addressing misinformation about transplantation. For example, many people think that a donor must be a blood relative, which is not true. As well, some people assume that the recovery time from kidney transplantation is a long process (e.g., six months), when many people have a much quicker recovery time (e.g., six weeks).
Susan McKenzie is a patient partner co-leading the research project and who has been a TAP ambassador since its inception. She received a kidney from Reich, her sister-in-law. McKenzie emphasizes what a difference information from patients, to patients, can make. She says, “This is great, because as patients we know the more we can ‘naturalize the idea of transplantation’ for other patients – by being living breathing, accessible examples of transplant – the less frightening the idea becomes for patients when and if they get to that point in their kidney journey.
“When I was a patient, I never had the benefit of seeing or meeting anyone who had had a successful transplant and the idea was very scary,” says McKenzie.
TAP ambassadors have been making their rounds throughout 13 kidney clinics in Ontario since 2018. Over that same time period, there has been an increase in the number of living donations, although it’s not possible to say with certainty that the TAP program is the underlying reason for this increase. Nevertheless, the TAP ambassadors are pleased. “I’m very thrilled with the progress,” says Reich.
Given how TAP ambassadors typically made in-person visits to kidney clinics, their work was affected by COVID. But when they could no longer do in-person visits, a new opportunity to reach more people emerged through virtual communication. As they shifted to virtual sessions, this allowed ambassadors to reach new patients and health professionals in other locations.
Reich says the TAP team also took the time to gather group profile information on all of the ambassadors (e.g., age, gender, transplantation status). This allows for patients or donor recipients to be better matched with ambassadors with the most relevant experience to that individual.
“So if there is a patient in a centre in Sudbury who wants to connect with an ambassador who has a similar lived background, we could perhaps find one from another active centre,” explains Reich.
There are currently more than 75 TAP ambassadors across Ontario who have completed more than 4,000 face to face meetings between January 2017 and March 2020. TAP is part of the larger Living Donor research project being completed by Can-SOLVE CKD.
“People often feel better about transplantation after talking to someone who has done it. They don’t have to feel as afraid, they don’t have to feel as alone. And that’s the rewarding thing – when you can make a difference in someone’s life.”