What began as a question from Diabetes Action Canada Patient Partners has become new research revealing significant gaps in preventive cardiovascular care for people living with diabetes across Canada.

Research that begins with Patient Partners

What questions would people living with diabetes ask if they could help determine how Canada’s primary care data is used for research?

In 2022, Diabetes Action Canada (DAC) brought Patient Partners together through a consultation led by Dr. Holly Witteman to identify the questions that mattered most to them. The process generated 14 priority research questions, seven focused on type 1 diabetes and seven on type 2 diabetes, which were presented at the Diabetes Canada Conference that year.

One of those questions has now resulted in a new study published in Primary Care Diabetes, examining whether people living with diabetes are receiving recommended care to reduce their risk of cardiovascular disease.

Led by Dr. Katharine (Katie) Mackett, a longstanding member of the DAC community and recent PhD graduate form McMaster University, the research demonstrates how patient-identified priorities can guide the use of health data to investigate gaps in care.

What the research found

Cardiovascular disease remains a major cause of illness and death among people living with diabetes. Clinical practice guidelines recommend regular monitoring and preventive treatments to help reduce this risk.

Using DAC’s National Diabetes Repository, researchers examined primary care electronic medical records from five Canadian provinces to assess whether preventive care was being documented in accordance with Diabetes Canada’s 2018 Clinical Practice Guidelines.

The analysis included 38,901 individuals in 2022 and identified substantial gaps in recorded care:

• 56% had documented blood pressure monitoring.
• 36% had a recorded weight measurement.
• 12% had the recommended frequency of HbA1c monitoring documented.
• 9% had recommended lipid monitoring documented.
• Fewer than 2% had a documented referral to dietetic services.

The researchers also identified differences associated with age, sex and geography. For example, urban residents were more likely than rural residents to have documented referrals to dietetic services, while men were more likely than women to have prescriptions for cholesterol-lowering medications.

These findings highlight opportunities to strengthen preventive cardiovascular care and better understand where people living with diabetes may face barriers to receiving recommended services.

Because the study relied on electronic medical records, the findings also point to the importance of improving how care is documented and how health information is collected and shared.

Patient Partners helping shape the research

What makes this study particularly meaningful for Diabetes Action Canada is the role Patient Partners played throughout the research process.

The research question emerged from DAC’s earlier priority-setting initiative, ensuring that the investigation addressed an issue identified as important by people living with diabetes.

Patient Partners also contributed to the study itself. The research team shared its results with Patient Partners to support meaningful interpretation, and two Patient Partners, Sylvie Dostie and Dana Tannenbaum are co-authors of the publication.

Their involvement reflects an approach to patient-oriented research that extends beyond consultation. People with lived experience helped establish the research priorities, contributed to the interpretation of evidence and participated in communicating the findings through publication.

DAC also supported the research through its National Diabetes Repository, a resource developed with Patient Partners that brings together de-identified primary care data to support diabetes research. The DAC team contributed to the curation of the data used in this analysis.

Together, these contributions demonstrate how patient engagement and research infrastructure can work alongside one another, connecting questions identified by people living with diabetes with evidence that can inform healthcare improvements.

Why this matters

The findings raise important questions about how preventive cardiovascular care is delivered, monitored and documented across Canada.

Although clinical guidelines establish clear recommendations, this study identified gaps between those recommendations and what was recorded in primary care.

The researchers suggest that improving implementation of clinical guidelines, strengthening communication between patients and healthcare professionals, and improving data quality could help address these gaps.

The study also provides an example of the value of involving Patient Partners in determining what research gets done. Rather than beginning solely with questions developed by researchers, this work began by asking people living with diabetes what they wanted to know. The resulting study provides evidence relevant to clinical practice, health-system planning and future research.

Looking ahead

The findings provide a foundation for further research to understand why gaps in preventive cardiovascular care persist and how they can be addressed. They also reinforce an important priority for Diabetes Action Canada’s sustainability planning: ensuring that research continues to reflect the questions and priorities of people living with diabetes.

This publication demonstrates the value of that approach, tracing a question identified by Patient Partners through to published evidence that can inform improvements in diabetes care.

📖 Read the full paper: Room for Improvement: People living with diabetes in Canada are not receiving guideline-recommended preventive cardiovascular care, published in Primary Care Diabetes, September 2026.