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Category: Project

Description: Background: The experience of living with a chronic disease such as diabetes can provide valuable knowledge about medical care and self-management. Such knowledge may be of use to people seeking to improve diabetes self-management and to health professionals seeking to provide better patient-centered care. Objective: To identify potential areas for improvement in diabetes care from the perspectives of people living with diabetes and their caregivers. Methods: We interviewed 21 people living with diabetes (hereafter called expert patients) who were patient partners in a national Patient-Oriented Research network. Expert patients were men and women from various backgrounds, including Indigenous people and immigrants to Canada. They had significant lived experience of diabetes and were able to offer diverse patient and caregiver perspectives. Three authors independently analyzed videos using inductive framework analysis, identifying themes through discussion and consensus. Results: From expert patients’ perspective, people living with diabetes benefit from acknowledging and accepting the reality of diabetes, receiving support from their family and care team, and not letting diabetes control their lives. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency. Conclusions: From the perspectives of expert patients, there are areas for improvements in diabetes care. These improvements are actionable individually by patients or health professionals and also collectively through collaboration between both groups. Improving the quality of care in diabetes is crucial for improving health outcomes in Canada.