This piece was written by Linxi Mytkolli, Director of Patient Engagement at Diabetes Action Canada and a member of the steering committee for the first Global Summit to End Diabetes Stigma, this piece shares her reflections after attending and facilitating the event.

The End Diabetes Stigma Global Summit in Jaipur, India, has come to a close.

For three days, over 200 people from more than 40 countries came together to talk about something often hard to name, and even harder to measure: diabetes stigma.

There were full rooms, difficult conversations, and moments of real connection. There was also a talent and fashion show that reminded us—without slides or scripts—that people are more than their diagnoses.

Diabetes Action Canada (DAC) was not on the sidelines of this Summit.

As a Trailblazer Partner, DAC helped shape the Summit from the inside. Members of our team contributed to the Steering Committee, supported facilitation across sessions, and helped design the flow of the program itself. More than a dozen DAC-connected abstracts were presented, and patient partners from our community contributed as speakers, panelists, and discussion leads throughout.

This level of involvement reflects more than participation. It reflects a model of work—one that centers lived experience, co-design, and practical impact—and that is increasingly being recognized and adopted beyond Canada.

The Summit created alignment.
What comes next is what we do with it.

What stood out

A few things became clear over the course of the Summit.

Stigma is still present across nearly every setting people navigate—healthcare, workplaces, schools, and within families. It is not always explicit. Often, it shows up in tone, assumptions, and systems that were never designed with people in mind.

At the same time, the strongest counterpoint to stigma wasn’t a framework. It was belonging.

When people felt safe, they spoke differently. They shared more. They challenged more. They connected faster. That shift matters because stigma depends on isolation.

There was also a clear distinction between work done for people and work done with them. The projects that resonated most were not only informed by lived experience—they were led by it. They were more usable, more relevant, and more likely to extend beyond the room.

What we are taking forward

The Summit did not produce a single solution. It clarified where action is most needed—and where progress is possible.

1. Develop a co-designed Diabetes Stigma Index

One of the clearest gaps is the absence of a shared way to define and measure stigma.

Without this, stigma remains difficult to track, compare, or address systematically.

A Diabetes Stigma Index—co-designed with patient partners, researchers, and policymakers—would:

• Establish a common definition of stigma.
• Measure experiences across clinical, workplace, and community settings.
• Identify where stigma is most persistent.
• Track change over time.

This is not simply a research priority. It is foundational to accountability.

DAC is well-positioned to help lead this work in Canada and contribute to global alignment.

2. Move from individual awareness to system design

Efforts to address stigma often focus on individual behaviour, particularly in clinical settings.

This approach is necessary, but insufficient.

Stigma is also embedded in how care is structured—in forms, workflows, guidelines, and time constraints.

Addressing stigma requires examining how systems function, not just how individuals act within them.

3. Fund knowledge mobilization as core infrastructure

At the Summit, DAC’s Research-to-Action Fellowship projects demonstrated what happens when knowledge is translated with and for communities.

These tools were not abstract. They were usable, culturally grounded, and designed for real-world application.

This kind of work requires dedicated investment. It cannot be positioned as an optional extension of research.

4. Design for belonging, not just participation

Some of the most impactful moments at the Summit were not formal sessions.

They were spaces where people felt comfortable being visible—through storytelling, culture, and shared experience.

These environments change how people engage. They are not incidental. They can be designed.

5. Shift from engagement to shared authority

There is increasing clarity that engagement alone is not enough.

People want to shape decisions, not only inform them.

This requires defined roles, clear pathways for influence, and recognition of the value of lived experience through compensation and leadership opportunities.

DAC has been advancing this shift through its governance models, and the Summit reinforced the importance of continuing this work.

What this means for DAC

The Summit did not change our direction. It sharpened it.

For DAC, this means continuing to lead in areas where there is both need and momentum:

• Advancing a co-designed Diabetes Stigma Index.
• Scaling the Research-to-Action Fellowship as a model for stigma reduction and knowledge mobilization.
• Strengthening governance approaches that embed shared authority with patient partners.
• Integrating stigma more explicitly across research and implementation efforts.

It also means continuing to connect this work to policy—ensuring that what is learned through community and research is reflected in how systems are designed, and decisions are made.

What this means for Canada

Canada is in a position to lead on this work.

There is already a strong foundation of patient partnership, collaborative research, and policy engagement.

The opportunity now is to align these efforts more intentionally—moving from individual initiatives to coordinated approaches that can be sustained and scaled.

This includes:

• Investing in national measurement efforts, including a stigma index.
• Embedding lived experience into policy and governance processes.
• Supporting models that translate research into practice in meaningful ways.

A final note

The Summit created a space where people could speak openly about their experiences and where those experiences were taken seriously.

That matters.

But the impact of the Summit will not be measured by what was said. It will be measured by what changes as a result.

The work ahead is not about maintaining momentum.
It is about translating it into systems, structures, and decisions that make stigma harder to sustain.

In the coming months, DAC will be convening a series of cross-sector conversations to move this work forward.

This will include bringing together patient partners who were on the ground at the Summit, alongside research and policy leaders, to help democratize the learnings and share best practices across contexts.

We will also be reconnecting with global partners we met in Jaipur to explore and coordinate new international collaborations.

Alongside this, we will be working to elevate patient partner perspectives and translate them into clear calls to action that can inform research, policy, and practice in Canada and beyond.

That work is already underway.