Arlene Desjarlais knows first hand how deeply kidney disease can affect a family. For years, she cared for her late husband, Glen, as they navigated kidney disease and cardiovascular complications—attending medical appointments, taking him to dialysis treatments, and advocating hard for him to receive the best possible care.
After Glen passed away, Arlene chose to continue advocating for patients like him—this time by helping strengthen kidney research across Canada as a patient partner.
Patient partners are people with lived experience of a health condition who provide input on research projects. Their perspectives help ensure studies are relevant, feasible, and aligned with patient and community priorities. At the Canadian Nephrology Trials Network (CNTN), a pan-Canadian initiative that brings together patients, researchers, clinicians, and decision-makers to advance nephrology clinical trials, patient partners play a central role in reviewing and shaping research proposals before studies move forward.
Arlene has been a patient partner with CNTN for almost a decade. When she first joined, patient perspectives were not always fully integrated into research processes. But as more patient partners stepped forward to share their lived experiences, perspectives, and expertise, the power of this approach caused a fundamental shift.
“Now the peer reviews [of research projects] don’t really go forward unless there is a patient partner present,” she says. “The patient’s voice comes out more and more in these reviews.”
Driving meaningful change
As a Métis woman, Arlene also understands the importance of ensuring Indigenous voices guide research involving Indigenous communities. She recalls an early CNTN research project in an Indigenous community that initially lacked Indigenous partnership. Following feedback, the research team meaningfully engaged Indigenous partners to help align the work with community values and priorities.
“It has been amazing to see the growth and the change of the acceptance level of everybody [at CNTN]. They all want to learn,” Arlene says. “I have never felt unsupported, and I have never felt like the token person.”
Dwight Sparkes, another CNTN patient partner, brings his own lived experience to the table. Diagnosed with chronic kidney disease in 2014 following complications from a rare autoimmune condition, he has spent more than a decade actively managing his kidney health through proactive care, treatment, and monitoring. That experience now informs his contributions to research.
Sparkes acknowledges that joining research discussions can feel intimidating at first.
“As human beings, we all have this fear of the unknown,” he says, adding that some people may not feel “qualified” to work alongside researchers. “But your lived experience is essential to the kidney research process, and it really adds value.”
Support and training for new patient partners
As Sparkes points out, CNTN offers training and resources to help new patient partners feel confident in their role. One example is the self-paced online module, Patient Partners in Peer Review, developed in partnership with the Kidney Foundation of Canada and the Canadian Donation and Transplantation Research Program.
The 30-minute course explains what peer review is, why it matters, and how patient partners can contribute—no prior research experience required.
Learn more and get involved
CNTN welcomes patient partners from across Canada who want to help ensure kidney research reflects real patient priorities. Whether you are living with kidney disease or caring for someone who is, your voice can make a difference.
Here are 3 steps you can take today to learn more:
- Visit CNTN.ca
- Contact Research Coordinator Omo Enilama at omo.enilama@phc.ca
- Register for CNTN’s annual research symposium on May 6, 2026—a free hybrid event where patients, researchers, and trainees come together to share updates on ongoing trials, learn about CNTN’s future plans, and explore opportunities to get involved. Learn more about the free hybrid event here.
Both Sparkes and Desjarlais encourage others affected by kidney disease to consider becoming patient partners. “You just have to take a leap of faith and go for it,” says Desjarlais. “This is what I did.”