Patients are at the centre of everything we do.
Patient engagement in Can-SOLVE CKD means active collaboration between patient partners, researchers, and policy makers in all components and projects within the network.
We strive to create a culture change in kidney research based on the guiding principles of the SPOR Patient Engagement Framework: inclusiveness, support, mutual respect, and co-building.
I always thought that this disease was bigger than me, and if I could make some difference, I would.
The Patient Governance Circle is the core and the heart of Can-SOLVE CKD. This diverse committee reflects 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.
Every committee and working group within the Can-SOLVE CKD has at least two patient partners. Using their lived experience of kidney disease, patients guide the decision-making of all components within the Can-SOLVE CKD Network.
Our robust national research program is based around what matters most to patients. Using the James Lind Alliance priority-setting method, we led a national consultation with patients, their families, and care providers to identify the top research priorities of people with kidney disease.
Understanding these priorities helped inform the design of research projects based around three main themes: identifying kidney disease earlier, developing better treatments, and delivering innovative patient-centred care.
Individual patient engagement plans have been developed by research project teams to specify patient partners’ involvement. These patient engagement plans span from “consult” to “collaborate” on the spectrum of engagement as defined by the International Association for Public Participation (IAP2).
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We strive to create a broad range of roles and opportunities for patient partners based on their interests, experiences, and skills. We have witnessed remarkable growth in the abilities and confidence of patient partners, several of whom have taken on leadership roles throughout the network and in their communities.
Meaningful relationships between patient partners and researchers have led to presentations at professional meetings, co-authorship of publications, and inclusion in planning committees for local and international meetings.
Patients’ participation in peer-review and evaluation has enhanced project relevance, and their ongoing input will support the implementation and sustainability of research activities. This strong foundation, built over the last five years, is the springboard for an ongoing transformation of kidney research to optimize patient care and improve outcomes.
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