Diabetes Action Canada (DAC) was built on a simple idea: research works better when the people most affected by it help shape it. But even with that commitment, we kept asking ourselves an important question, are we really doing patient engagement as well as we could be?

A new paper published in the Canadian Journal of Diabetes takes a deep look at that question. Led by DAC researchers and Patient Partners, Optimizing patient partner engagement and integration in research shares what people living with diabetes told us about what meaningful partnership in research actually looks like and what needs to change to make it work better.

👉 Read the full article: https://pubmed.ncbi.nlm.nih.gov/41386479/

Why we did this study

Diabetes affects millions of people, but the burden is not shared equally. People facing racism, poverty, language barriers, stigma, or limited access to care often experience the worst outcomes. Patient-oriented research is meant to help close those gaps by making sure research reflects real-world needs, but too often, patient involvement becomes rushed, unclear, or tokenistic.

We wanted to move beyond good intentions. We wanted to learn directly from the people doing this work with us: our Patient Partners.

What we did

In 2022, DAC brought together 35 Patient Partners from across Canada (in English and French) living with Type 1 or Type 2 diabetes, and with a wide range of backgrounds and experiences. Through 13 focus groups, participants shared what it’s really like to be part of a research team: what helps them contribute, what makes them feel valued, and what gets in the way.

Two Patient Partners were also part of the research team from the start. They helped design the study, interpret the findings, and are co-authors on the paper, a reflection of DAC’s commitment to research done with patients, not just about them.

What Patient Partners told us

Patient Partners were clear about what meaningful engagement feels like. It starts with being respected, heard, and valued, not just invited to a meeting, but treated as an equal member of the team. It also means having relationships with researchers, being supported, and being able to learn and share knowledge in both directions.

Most importantly, engagement feels meaningful when people can see that their input makes a difference. When research results are shared, acted on, and reach the communities they are meant to serve.

At the same time, participants were honest about where things don’t always work well. Some described confusion about how to join projects or what their role was supposed to be. Others felt overwhelmed by jargon, left out of decisions, or unsure whether their contributions were truly being used.

Living with diabetes adds another layer. Managing blood sugars, complications, fatigue, stress, and stigma can make it hard to commit time and energy, even when people are deeply motivated to give back. Participants spoke about the emotional toll of diabetes, the need for flexibility, and the importance of cultural and language-appropriate support.

A new way of thinking about patient engagement

One of the most important insights from this study is that patient engagement is not one-size-fits-all. What people need before a study begins is different from what they need once a project is underway, or when it comes time to share the results.

Based on what Patient Partners shared, the research team developed a research-stage-specific engagement framework that outlines how patients and researchers can be better supported:

• Before a project – making it easier to find opportunities and be matched to the right work
• At the start – clear onboarding, plain-language project summaries, and defined roles
• Throughout – regular communication, flexible ways to contribute, and shared decision-making
• At the end – recognition, authorship, and feedback on how patient input shaped the work

This approach moves beyond abstract principles and offers practical guidance that research teams can actually use.

How this research shaped DAC’s Phase 2

This study was not done in isolation. The focus groups took place at a pivotal moment for Diabetes Action Canada, just as the Network was preparing to move from its first phase into Phase 2 (2022–2026). That timing meant the findings were not only academic; they were immediately actionable.

As early findings came in, DAC leaders, staff, and Patient Partners used them to reflect on what was working and what needed to change. Clear themes emerged around the need for better onboarding, clearer roles, stronger communication, and more flexible and equitable ways for people to contribute. Those insights directly influenced how DAC designed and strengthened its Patient Engagement Program for Phase 2, from how Patient Partners are matched to projects to how they are supported throughout the research process.

In other words, this research did not just study DAC’s engagement model, it actively shaped it. The framework presented in this paper reflects both what Patient Partners told us and how DAC responded, making Phase 2 more grounded in lived experience, more accessible, and more aligned with what meaningful partnership actually requires.