Author: Linxi Mytkolli

November 14th is World Diabetes Day and this year our Director of Patient Engagement, Linxi Mytkolli, was involved in a number of exciting events and media appearances to discuss her lived experience. Mytkolli took part in a World Health Organization (WHO) social media live event, which was viewed by people around the globe. During the event, she discussed what it’s like to live with diabetes in Canada and answered questions from viewers. The live event is available for viewing on several social media platforms –  watch it on LinkedIn now!

In addition, Mytkolli’s voice can be heard on CBC’s Your World Tonight news broadcast, which re-broadcast several quotes for the WHO event. Listen now!

The Diabetes Action Canada (DAC) 2024 Workshop, held on May 30th and 31st at the Chelsea Hotel in downtown Toronto, marked our most successful event to date. This gathering brought together researchers, healthcare professionals, Patient Partners, trainees, and collaborators in patient-oriented diabetes research under the theme “Patient Partners as Agents of Change.”

Our new report provides an overview of the event and highlights all of the learnings from this two days dedicated to improving patient-engagement in research. 

Our annual workshop began with a pre-event designed by the DAC Indigenous Patient Circle: “Cultivating Equity: Advancing Anti- Racism in Healthcare.” This day-long session, attended by trainees, Patient Partners and staff, featured a diverse program incorporating traditional Indigenous knowledge and practices with presentations addressing unconscious bias, racism in healthcare, and the Truth and Reconciliation Commission’s Calls to Action.

Councillor Leslie Maracle, who oversees the Nation Wellbeing and Wellness portfolio for the Mississaugas of the Credit First Nation, opened the event by sharing her experiences as a frontline worker in the community.

Invited guests included members of the First Nations Health and Social Secretariat of Manitoba (FNHSSM), as well as Dr. Barry Lavallee, a Métis and Anishinaabe physician and advocate for culturally appropriate healthcare. Dr. Lavallee delivered a powerful message emphasizing the deep connection of Indigenous Peoples to the land and the ongoing harm caused by systemic racism and colonial structures that continue to affect Indigenous communities today.

Breakout sessions and role-playing exercises highlighted the uncomfortable truths of misconceptions, stereotyping, and racist behaviors in healthcare settings. One session, led by Cheryle Dreaver, Carla Cochrane, and Mike Alexander, revealed the disappointing and harmful experiences many Indigenous Peoples face when accessing care, and the extra efforts required to combat unconscious bias and racism in their healthcare interactions.

The event concluded with a sharing circle where participants discussed the impact the day had on all attendees personally and professionally. This session effectively spotlighted the systemic barriers that persist despite the Truth and Reconciliation Commission’s Calls to Action, and how research can better integrate Indigenous knowledge and practices.

The evaluation from this workshop was very positive, and the session is ready to be scaled to larger audiences.

An update from our Director of Patient Engagement, Linxi Mytkolli.

November is here, which means it’s Diabetes Awareness Month! This is an important time for our team at Diabetes Action Canada (DAC), where we’re excited to share what we’ve been working on to support and amplify the voices of people living with diabetes. From international panels to innovative projects, here’s a look at the month ahead.

Presenting at DiabetesMine’s D-Data ExChange in San Diego

We’re honoured to bring DAC’s work on patient engagement to DiabetesMine’s D-Data ExChange on November 7th. This event is a one-of-a-kind gathering where patient-entrepreneurs, tech innovators, and healthcare leaders meet to discuss the latest in diabetes care. It’s a powerful space to connect and learn from others who are equally passionate about improving life with diabetes.

Global Connections with the WHO Diabetes Global Compact

We’re reconnecting with the WHO Diabetes Global Compact on November 8th for updates and a spotlight on impactful diabetes work happening across Africa. Being part of the global diabetes community is invaluable, as it gives us the opportunity to learn from each other and build a stronger, more connected support network for people with diabetes worldwide.

Panel at the Ottawa Art Gallery Symposium: HeARTcare

Later this month, we’re joining a panel at the Ottawa Art Gallery Symposium: HeARTcare to discuss patient engagement in research and how art can convey complex health knowledge in an accessible way. This event will bring together artists, healthcare leaders, and advocates to foster collaboration and spark meaningful conversations on November 20th. Dr. Daisy Fancourt, a leading voice in arts and health from the WHO, will be our keynote speaker.

Engaging with MyRoad Trainees

In the lead-up to the Diabetes Canada Conference, we’ll be working with MyRoad, a Canada-wide training platform dedicated to supporting the next generation of diabetes and obesity researchers. During their trainee day on November 20th, we’ll talk about how to embed patient engagement from the earliest stages of research. This session is a fantastic opportunity to help young scientists understand the value of collaborating with patients throughout their work.

Panel at the Diabetes Canada Conference: Knowledge Mobilization

We’re thrilled to be hosting a Knowledge Mobilization panel on November 22nd at this year’s Diabetes Canada Conference. Our eight patient partner fellows have been working tirelessly with four partner organizations since May to turn their research into projects that drive real change. We’re excited to share our collective journey and showcase their remarkable work, including:

• Indigenous advocacy flash cards
• Mental health infographics
• Obesity and diabetes comic strips
• South Asian and Afro-Caribbean patient vignettes

Each of these projects shows how research can come to life in ways that directly benefit our communities, making knowledge accessible and actionable.

Looking Ahead

Diabetes Awareness Month isn’t just a time to raise awareness—it’s about creating meaningful change. We’re incredibly proud of our team’s dedication to enhancing patient engagement and building partnerships that span the globe. Thank you for joining us on this journey, and let’s make November a month of progress, connection, and impact!

Warmly,

Linxi Mytkolli
Director of Patient Engagement
Diabetes Action Canada

Dr. Robin Mason retired Sept. 30^th  from her role at Women’s College Hospital in Toronto and moved  into a Scientist  Emeritus position at the hospital’s research institute. While she  will continue to support important research in sex and gender, this milestone is a wonderful opportunity to reflect on and celebrate her career.

With an early focus on intimate partner and gender-based violence, Mason later expanded her lens to look at sex and gender in research. She was one of the first researchers to become involved with Diabetes Action Canada, contributing to the initial proposal for the organization. She is passionate about the need to include those with  lived experience in research and ensuring there are diverse voices at the table.

Working with patient partners, including the late André Gaudreau, and her team at Women’s College, Robin highlighted the importance of incorporating sex and gender at all levels of research in their study of the lived experience of diabetes among men and women. “I think we did remarkable work. We were able to understand some of the very particular experiences of women with type 1 and type 2 diabetes and men with type 1 and type 2. Within a lot of the academic literature type 1 and type 2 are often conflated and certainly not looked at through a sex or gender lens, so I think that that was really an impressive piece of work.”

The project, which was welcomed by those with lived experience, follows a trend in her work. Whether it is looking at diabetes or gender-based violence, she aims to educate providers on how best to serve women and women-identified individuals, many of whom would not have learned the importance of intersectional differences in medical school. She wanted to ensure that when looking at diabetes or any other issue, they would see the condition through the lens of the person in front of them and their life experiences – not just what was found in textbooks about  a medical condition.

“One of the other things I’m most proud of is what Dr. Paula Rochon and I accomplished through a provincial  initiative called, Women’s Xchange. We  supported small community/academic partnered research projects  that had locally relevant women’s health issues at their core. I feel really good about that because community organizations and citizens participated in  research in a very meaningful way, studying  issues that  were their issues. That felt significant,” she says.

While her latest move is a retirement of sorts, Robin  will not fully be closing the door on research. She, Joyce Li and colleagues at Women’s College are about to launch another interactive online module on community/patient engaged health research. The module, Making Research More Participatory, provides an accessible introduction to participatory research including important considerations for both investigators and potential patient partners and real case studies of patient engaged research. The module will be available in December 2024 and it, as well as other similar modules, can be found on the Women’s Age Lab website.

“Robin’s leadership and dedication have been instrumental in shaping DAC’s success,” says DAC Executive Director, Tracy McQuire. “We have learned so much from her and the team at Women’s Age Lab and we are grateful for their continued connection with our Network, in particular our Patient Partners. Robin’s leadership, compassion, and commitment have helped shape DAC’s success and fostered a positive experience for everyone involved”.

Robin will also continue  supporting  some of the research underway and  plans to stay engaged with DAC and other organizations. She’s excited to have the opportunity to take time away from full-time  work  to explore other interests, but still be involved. “I want to continue to be a contributor if and when it might be helpful, whether with  sex and gender-based analysis reviews or in other ways that help maintain my connections to the research community,” she says.

Article by Krista Lamb

Over the last several months, we’ve been celebrating the accomplishments of our inaugural Catalyst for Change Award winners. These are Diabetes Action Canada patient partners who have made an exceptional contribution to patient-oriented research. Our next winner? Matt Larsen.

Matt Larsen discovered patient-oriented research when, in 2019, he was invited to participate in a focus group about what it’s like to live with diabetes while experiencing homelessness. The group, led by Dr. David Campbell, was a revelation for Larsen, who, until then, had not realized  he could be part of the research process.

Initially, his reasons for participating in the study were practical; the project paid a small fee and he needed the money. He did not anticipate that it would change his life.  He found the focus group discussions provided meaning and connection, as well as an opportunity to share his experiences  in a supportive environment. He felt much less alone in his circumstances, and he and the other participants began to see the sessions as a highlight of their week.

Through that experience, Larsen developed a passion for patient-oriented research. He remains a part of Campbell’s team as a patient partner  he has contributed to multiple projects, including the Home Sweet Homeless photo exhibit and the making of the short film, Low, which is about what it’s like to live with diabetes while experiencing homelessness. He is also one of the inaugural fellows in the Diabetes Action Canada Research to Action Fellowship.

“I didn’t realize, at first, how important it is,” says Larsen of patient-oriented research. “Over the years, though, I’ve seen the impact projects like the photo voice exhibit have had on getting individual stories out. I think it’s very powerful. People with lived experience, especially this type of lived experience, are underserved in our society, so this work is important.”

Campbell, who nominated Larsen for the award, has been impressed by how dedicated Larsen is to improving outcomes for people with lived experience of diabetes and homelessness.

“I’ve known Matt for five years. He was initially recruited as a study participant in a participatory research project in January 2019. Over time he became a star community co-researcher. Matt took on a leadership presence among the group. He was always the first to complete his assignments and then helped his fellow co-researchers to advance theirs. He stood out among his peers, particularly with respect to his inquisitive approach to problems and his desire to generate new knowledge through the research process,” says Campbell.

“I invited Matt to join my research team as a research assistant in the spring of 2021 to take on the role of peer facilitator in our community-based participatory research program, and we have been working together closely since that time. Since working with me as a research assistant, Matt has truly excelled. He has led and participated in a number of research initiatives including data collection and data analysis, and he has contributed to manuscripts, posters, presentations, and abstracts. He is an author on six published manuscripts (including two in CMAJ) and numerous abstracts. 

“Matt’s abilities and aptitudes for research led me to invite him to take the next step in furthering his research expertise by joining my team as a graduate student, which he began in September 2022. Matt’s personal background is unlike any other student I have met. His first-hand experiences provide him with empathy, compassion and interpersonal skills which will enable him to become an outstanding asset to the community at large.” 

Larsen is excited about next steps. As a Diabetes Action Canada Fellow, he is working with different organizations, including Obesity Canada, where he is developing new skills and relationships. He has been attending conferences and taking part in the many trainings the fellowship provides. He is in the final year of his graduate program and is looking to transition into full-time employment in the research space. His main research interest is on shame and how that can impact a person’s decision to get the support they might need.

He looks forward to continuing to be an advocate and to sharing his own experiences to help others. “I think it’s really important to normalize discussions about topics that are considered “shameful”. If we don’t talk about our experiences and our feelings, that’s how shame breeds,” he says. “It is important  to have the courage to kind of talk about this stuff. Hopefully it can help other people as well.”

The Strategy for Patient-Oriented Research (SPOR) Refresh Committee recently released their Community Engagement Summary Report.

This report is a summary of the community engagement that was started last year, for CIHR to learn the parts of the SPOR program that are working well and highlights area where improvements can be made. If all continues in a positive direction, we can continue our work to break down barriers and help everyone live healthier lives.

Three main takeaways for DAC include:

1. Many parts of the SPOR program are working great! If CIHR continues to improve how it’s run and sets clearer goals, we can break down barriers and help everyone live healthier lives.
2. It’s so important for people with diabetes and other chronic health issues—who often struggle to get healthcare—to be fully involved in research that focuses on them. By using better ways to measure our success, we can see how our SPOR projects are making a real difference.
3. Creating a system where patients, researchers, healthcare workers, and policymakers all learn and apply patient-focused research together is key to making the SPOR Program a success for everyone.

Learn more and read the report.