Patients' perspectives on how to improve diabetes care and self-management: qualitative study.

People living with diabetes need and deserve high-quality, individualised care. However, providing such care remains a challenge in many countries, including Canada. Patients' expertise, if acknowledged and adequately translated, could help foster patient-centred care. This study aimed to describe Expert Patients' knowledge, wisdom and advice to others with diabetes and to health professionals to improve diabetes self-management and care. We recruited a convenience sample of 21 men and women. Participants were people of diverse backgrounds who are Patient Partners in a national research network (hereafter Expert Patients). We interviewed and video-recorded their knowledge, wisdom and advice for health professionals and for others with diabetes. Three researchers independently analysed videos using inductive framework analysis, identifying themes through discussion and consensus. Expert Patients were involved in all aspects of study design, conduct, analysis and knowledge translation. Acknowledging and accepting the reality of diabetes, receiving support from family and care teams and not letting diabetes control one's life are essential to live well with diabetes. 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. Expert Patients pointed to a number of areas of improvement in diabetes care that may be actionable individually by patients or health professionals, and also collectively through intergroup collaboration. Improving the quality of care in diabetes is crucial for improving health outcomes for people with diabetes.

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© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Déclaration de conflit d'intérêts

Competing interests: RN holds a fellowship grant from Diabetes Action Canada. Most authors are also members of Diabetes Action Canada, either as staff (OD), researchers (MJD, M-CT, JMcG and HW) or Patient Partners (RP, AMMcC and PD). We also obtained feedback on our results from Diabetes Action Canada’s Patient Partner Collective Circle. All participants (Diabetes Action Canada Patient Partners) were informed that participation in this study was independent of their other participation in Diabetes Action Canada and that, if they preferred not to participate, the decision would have no impact on their participation in Diabetes Action Canada. Patient Partners were not compensated for their participation in the video recording. However, all Patient Partners were offered compensation for their time attending the meeting and reimbursement of travel costs. Such compensation and reimbursement were in accordance with the network’s compensation and reimbursement policy. This policy aims to appropriately recognise and value the expertise that Patient Partners bring to research within the network. Patient Partners were also offered compensation for time spent reviewing and commenting on the findings of this study