The Patient Governance Circle is an agile decision-making body reflecting the significant breadth of expertise among Can-SOLVE CKD patient partners. It is composed of up to 15 patients affected by a broad range of medical conditions (e.g., diabetes, heart disease, polycystic kidney disease) as well as family caregivers and kidney donors.

The Patient Governance Circle meets on a quarterly basis to provide input and guidance on all aspects of Can-SOLVE CKD, from setting priorities to supporting patient engagement in the collection and communication of research evidence.

Patient Governance Circle members are actively involved in various network activities, such as:

• Training and Mentorship Committee
• Research Operations Committee
• Canadian Nephrology Trials Network
• Knowledge User/Knowledge Mobilization Committee

Contact: Leah Getchell, Patient Partnership and Training Lead (lgetchell@cansolveckd.ca)

The Indigenous Peoples’ Engagement and Research Council (IPERC) serves to guide the conduct of the Network’s activities in accounting for the unique aspects of patient-oriented research involving First Nations, Inuit, and Métis peoples.

Using an ethical framework that encompasses the principles of ownership, control, access and possession (OCAP) and the elements of participatory research, IPERC’s mandate is to ensure that Can-SOLVE CKD appropriately incorporates, addresses and respects the unique needs and perspectives of Indigenous peoples.

Members of the council include patients, families, caregivers, Knowledge Keepers, health professionals and federal/provincial decision-makers.

Contact: Craig Settee, Cultural Competency Manager (csettee@cansolveckd.ca)

The Steering Committee is responsible for overall strategic leadership and governance of Can-SOLVE CKD. It is composed of representative from diverse stakeholder groups, and includes the co-chairs from other committees (e.g., IPERC, KT/KU Committee, the ROC, etc.) as well as the co-principal investigators of the network.

The Steering Committee meets quarterly and reports to the Boards of Directors of the Canadian Society of Nephrology (CSN) and the Kidney Foundation of Canada
(KFOC).

This committee consists of diverse stakeholders who play a critical role in evaluating the network’s research projects. The ROC performs annual reviews on all research projects to provide guidance for successful implementation of the Can-SOLVE CKD’s research program and ensure that projects align with patient priorities.

The ROC consists of Indigenous and non-Indigenous patient partners, physicians, scientists, experts in research methodology, and members of the Can-SOLVE CKD Operations team. Whereas patient input has traditionally been completed at a single point during the research review process, if at all, this novel approach using the ROC ensures better integration of patient input throughout the entire research process.

Contact: Cynthia MacDonald, Project Manager (cmacdonald@cansolveckd.ca)

This committee develops a wide range of relevant, accessible, and meaningful tools to support patient-oriented research within the Can-SOLVE CKD network and beyond.

It is composed of researchers, Indigenous and non-Indigenous patient partners, and representatives from the Kidney Foundation of Canada and Can-SOLVE CKD staff.

Contact: Leah Getchell, Patient Partnership and Training Lead (lgetchell@cansolveckd.ca)

In collaboration with patient partners, the KT/KU Committee provides guidance, expertise and direction for knowledge translation (KT) activities throughout the network. This involves working with Can-SOLVE CKD project teams to implement their new evidence and practices into clinical practice.

Contact: Selina Allu, Knowledge Translation Broker (soallu@ucalgary.ca)

The Pediatrics Committee is responsible for coordinating and conducting high-quality pediatric kidney research across the Can-SOLVE CKD Network. Its aim is to improve the health of children across Canada who are living with kidney disease. The committee currently includes pediatric kidney doctors and researchers from across the country. They identify research priorities by working closely with other researchers, experts, and community and funding partners, together with the larger Can-SOLVE CKD Network.

Contact: Alicia Murdoch, Project Manager (amurdoch@cansolveckd.ca)