Abstract
INTRODUCTION: Patients and caregivers living with diabetes experience multiple barriers to diabetes management. These include financial, geographic, and lack of culturally relevant diabetes education. Our aim was to understand the perspectives of patients living with diabetes on what should be prioritised in Alberta regarding diabetes care, management, and treatment. In this paper, we described our community engagement process and summarised the main priorities identified by Albertans regarding diabetes care, management, and treatment. METHODS: Our team consisted of academic researchers, research & engagement staff, and two experienced patient partners, one with lived experience of Type 1 diabetes, and one family caregiver of Type 2 diabetes patients. We conducted a patient-oriented qualitative study through focus groups with patients living with diabetes and caregivers across Alberta. Notes and reflections from the focus groups were qualitatively analyzed using content analysis in an inductive manner. RESULTS: A total of 60 Albertans living with Type 1 (55%), Type 2 (42%), pre-diabetes (2%), and latent autoimmune diabetes of adults (LADA) (3%) were engaged in focus group and interview sessions. The results of the 11 focus groups and two interviews with 60 Albertans were summarised into three main themes, and eight priorities (subthemes) identified within these themes: (1) Access to resources (medications and technology, social and mental health supports, physicians and specialists, and physical activity). (2) Compassionate care. (3) Education & research (awareness about diabetes & diabetes research, and improved patient and community informed research capacity). CONCLUSION: This work was undertaken to support the efforts of the Provincial Diabetes Working Group. Community consultations such as this are critical in informing health policy, as they ensure that decision-making is grounded in the lived experiences, needs, and priorities of patients and caregivers. Through the highlighted barriers to care, gaps in education, and culturally specific needs, these consultations provide actionable evidence to guide policy development, programme planning, and resource allocation. PATIENT OR PUBLIC CONTRIBUTION: Patient partners were involved in this study. Our two patient partners supported the recruitment of participants, facilitated focus groups and semi-structured interviews, and supported the interpretation of the results. This included the review of the main priorities identified. They also contributed to this manuscript as co-authors.