
janvier 14, 2025
(L – R) Kate Chong, Duane Sunwold, Bill Wang, Charles Cook, Jocelyn Jones, Thomas Ng
Patient partners at Can-SOLVE CKD Network are leaders in reshaping the kidney research landscape in Canada, and now they are making an impact at an international level. In November 2024, six patient partners from the network took the stage at the International Society of Nephrology’s (ISN) Research Consensus Meeting in Vancouver. Experts in nephrology from around the world expressed admiration for the patient partners’ messages and delivery, and many are now seeking to learn from our patient-oriented research model.
“The patient partners made such a big impact at that meeting. It positioned Can-SOLVE CKD and the work we do with patient-oriented research really well,” says Melanie Talson, Patient Partnerships and Capacity Building Manager at Can-SOLVE CKD.
ISN first reached out to the network in July 2024, asking whether patient partners would be interested in participating in the meeting, which the ISN describes as a “consensus meeting on changing paradigms of study” in chronic kidney disease. Over the next four months, Talson and other network staff set out to make sure that patient partners were well-equipped to participate meaningfully in the event.
Meaningful participation takes preparation
For the ISN meeting, patient partners were each assigned to attend two of four workshop sessions addressing complex topics related to novel clinical trial designs. Each workshop session that the patient partners were assigned to had five to eight research manuscripts to read in preparation for the workshop—a daunting task for anyone.
Leading up to the ISN meeting, patient partners had five preparatory sessions with network staff and Dr. Adeera Levin toreview the research materials together. One key preparatory outcome was the developmentof a handbook-style resource written by network staff which included plain language summaries of the research and a glossary of key terms and acronyms for patient partners to refer to as needed.
“We were given opportunities to ask a lot of questions about the topics we were assigned to,” explains Thomas Ng, a patient partner and member of Can-SOLVE CKD’s Patient Governance Council. “And after going through this summary document, we felt well prepared.”
Hard work and collaboration pay off
In November, Ng and his colleagues from the U.S., Hong Kong, and across Canada—including Charles Cook, Kate Chong, BillWang, Duane Sunwold, and Jocelyn Jones—entered Simon Fraser University’s massive Centre for Dialogue building in Vancouver. Ng says that being in the circular auditorium made him feel like he was attending the United Nations General Assembly. The room was full of people from various backgrounds including nephrologists, healthcare providers, industry representatives, health regulators, clinical researchers, and lab scientists. Ng says that, while participating in such an event can feel intimidating, he received excellent feedback from many different attendees afterward.
For example, an Australian nephrologist commended the patient partners on their level of participation and Indigenous representation, while expressing interest in bringing a similar model of patient-centred research to her own homeland.
“On the last day, there was a statistician from Germany [who] told us that by listening to our story, from a patient partner perspective, it puts a lot more meaning to his work,” Ng says. “And now he knows that each number is not just a number, but a person behind it.”
Talson notes that representatives from numerous organizations have approached her about the impressive level at which Can-SOLVE CKD’s patient partners were able to participate in the conference and are seeking guidance on how to adopt our model. Talson says a manuscript describing the process is underway, as are conversations about how to collaborate with external organizations, such as the National Kidney Foundation in the U.S, to advance this work. ISN has even asked Can-SOLVE CKD to post the handbook-style resource created for patient partners on its website as part of its ISN-ACT Toolkit.
“We have received such positive feedback,” she says. “Can-SOLVE CKD is leading the way for patient partners to participate meaningfully in highly technical and scientific meetings and have tremendous impact.”

More Network Updates
Connect with us!
Subscribe to learn more about what we do, why it matters, and how you can get involved!