May 27, 2026

As Can-SOLVE CKD marked its 10th anniversary in Québec City, one message emerged clearly across presentations: research is stronger when patients help lead it.

Network members and funding partners gathered in May under the theme “Patient Partnership in Action: 10 Years of Learning, Leadership, and Change” to reflect on a decade of patient-oriented kidney research and hear from Can-SOLVE CKD research teams about lessons learned, breakthrough moments, and examples of new tools and knowledge being translated into real-world impact.

Across projects, presenters highlighted how the collaboration between researchers and patient partners has shaped research priorities, strengthened communication, and supported implementation into practice.

Improving communication with patients

Patient partners have played a key role in helping research teams make tools and resources more accessible and meaningful for patients and families. Several projects shared how patient feedback directly informed the development of educational materials to support implementation and improve communication.

For example, the STOP-MedHD team found that some patients were hesitant to reduce the number of medications they were taking. In response, the team created patient-friendly educational resources explaining when and how some medications can be safely stopped.

In other cases, patient partners identified resource gaps for health care providers themselves. Presenting on the iCARE project, patient partner Onalee Garcia-Alecio and team member Brianna Hunt described how youth patient partners and their families contributed to educational resources designed to help clinicians better explain kidney function concepts to pediatric and adolescent patients.

iCARE patient partner Onalee and project team member Brianna present at the Can-SOLVE CKD annual meeting.

Across presentations, teams emphasized that involving patient partners throughout the process helped ensure materials were accessible, relevant, and responsive to real-world needs — ultimately helping increase awareness and uptake of new clinical tools and approaches.

Supporting informed decision-making and patient autonomy

Several project teams also highlighted how patient-oriented research has led to tools and programs that support people at risk of or living with kidney disease to make more informed decisions about their care.

The Kidney Check program, which brings mobile screening and kidney health education to rural and remote First Nations communities, is guided by Indigenous patient partners and led collaboratively with participating communities. Cathy Woods, patient lead on Kidney Check and co-chair of the Indigenous Peoples’ Engagement and Research Council, described how this approach supports Indigenous-led implementation of guideline-concordant kidney care and respects the health autonomy of individuals.

“As someone whose kidney disease was diagnosed early, I believe kidney screening is so important,” said Woods. “Earlier diagnosis helps people better understand the disease and gives them the opportunity to improve their health outcomes through medication, education, and lifestyle changes. Working directly with First Nations communities, their health-care teams, and local leaders is essential to supporting people who may develop kidney disease.”

Kidney Check patient lead Cathy Woods presents at the Can-SOLVE CKD Annual Meeting.

The APPROACH project similarly highlighted the importance of supporting informed choice. The team developed a decision aid, My Heart and CKD, to help kidney patients weigh the benefits and risks of cardiovascular testing that could potentially affect kidney function. Patient partner Maureena Loth, a Denesųłiné from Cold Lake, Alberta, reflected on how tools like these can help advance Truth and Reconciliation efforts in health research and care by shifting the power to make individual health decisions back to the patient.

Expanding impact through patient partnership

Another key theme throughout the meeting was how patient partnership can strengthen implementation and help research reach more people.

Patient partners and researchers from Theme 2: Better Treatments projects reflect on lessons learned at the Can-SOLVE CKD Annual Meeting.

Dr. Mina Matsuda-Abedini, research co-lead on the PRO-Kid project, highlighted how the symptom assessment tool for children and youth with chronic kidney disease (CKD) has been gaining traction both nationally and internationally. The tool has been implemented at multiple sites across Canada, adapted for different age groups, and translated into French. International groups have also expressed interest in having the PRO-Kid questionnaire translated into additional languages and a Mandarin version is currently being validated.

Matsuda-Abedini noted that the project’s success and broader uptake stem in large part from involving patients and families at the very inception of the research project, when they identified symptom assessment for children as a key gap that needed to be addressed.

“What worked for scale-up was listening [to patient partners],” said Matsuda-Abedini.

Collectively, the presentations highlighted the value of patient partnership at every stage of research—from design through to implementation. After 10 years of working and learning together, these collaborations are helping make Can-SOLVE CKD’s research more relevant, accessible, empowering, and scalable, while continuing to shape the future of patient-oriented kidney research in Canada.

Explore Can-SOLVE CKD’s research projects and learn how patients, researchers, and partners are working together to shape the future of kidney research in Canada. Visit our Research and Get Involved pages to learn more.