Building a foundation for patient engagement

As a patient-oriented research network, Can-SOLVE CKD is committed to authentic patient engagement in all of our projects and activities. Achieving this engagement requires a culture shift in the way health research is conducted, which is why the network recently hosted two training workshops focused on building partnerships between patients and researchers.

The workshops, held in Toronto (Dec. 1-2) and Calgary (Jan. 16-17), delivered the first two modules of the Foundations in Patient-Oriented Research curriculum to a total of 55 Can-SOLVE CKD network members. The participants who received the training represent a broad cross-section of the network, including patient partners, researchers, policy-makers, and other partners.

With the successful completion of these workshops, nearly 60 percent of the Can-SOLVE CKD Patient Council has been trained, along with researchers from 17 of our 18 projects.

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In addition to structured learning, the curriculum encouraged interaction and discussion between the different participant groups. In one exercise, researchers were asked to sketch out the process of scientific inquiry from initial idea through data collection and eventual publication. The exercise served to help patients better understand the timelines on which research takes place. Patients were also asked to share their personal experiences of kidney disease and treatment, offering researchers a view of the issues that matter most to patients, their families, and caregivers.

The curriculum, developed by CIHR’s Curriculum Reference Group, is being offered around the country to individuals working in patient-oriented research. Training sessions are being offered by all provincial SPOR SUPPORT Units and national SPOR Networks in Chronic Disease.