The prevalence of diabetes in our province is approximately 13%. For people with diabetes, managing their disease is challenging, and they often experience financial hardship related to trying to follow the current recommendations to prevent complications. These hardships are amplified for people who have lower socioeconomic status. To address the needs of people with diabetes, we applied and received funding in October 2021 from the Quick Start Fund for Public Engagement to support the development of a Patient Advisory Committee (PAC) to inform a patient-oriented mixed-methods study focused on the care needs of individuals with diabetes in Newfoundland and Labrador (NL).
During this project, we engaged with patients and individuals that work with people with diabetes to increase understanding of the needs of people with diabetes in NL. This knowledge would guide a research study that considers the local context. We also began forming a Patient Advisory Committee (PAC) that would provide support for a patient-oriented mixed-methods research study that tested an intervention that addressed an identified need. Please note that we defined patient using the Canadian Institute of Health Research (2019) definition, "Overarching and inclusive of individuals with personal experience of a health issue, informal caregivers including family and friends."
Key stakeholders were identified as people with diabetes, nurses, nurse practitioners, certified diabetes educators, physicians, specialists (e.g., endocrinologists and ophthalmologists), foot care specialists (e.g., podiatrists and advanced foot care nurses), pharmacists, and social workers. The issues and gaps in care and services for people with diabetes were identified (e.g., medication management, support for navigation of services, and lack of patient education), barriers to care (e.g., large caseloads, patient finances, limitations of Certified Diabetes Educators scope of practice), and facilitators of diabetes care (e.g., improved documentation and patient education). Furthermore, the Terms of Reference of the PAC was developed.
Overall, the Quick Start funding allowed us to mobilize knowledge and expertise and develop a PAC to help inform our research. We are pleased with the connections we made with this engagement project and what we have learned about the needs of individuals living with diabetes in NL. We look forward to working with the PAC as we develop research questions, plan, and conduct a patient-oriented mixed-methods research study to develop and test the effectiveness of a program designed to meet the needs of individuals living with diabetes in NL and make a positive difference regarding health outcomes for this population.