Author: Linxi Mytkolli

Looking back on 2023, our Diabetes Action Canada Network has much to be proud of!

We successfully launched many projects and programs. We grew the number of Patient Partners and researchers in our Network, and we worked with community partners, government, and others to bring the findings of our research teams to people living with diabetes.

In the report, you’ll find an overview of some areas of our work in the previous fiscal year that we’re particularly excited to share. We hope you’ll see the many ways that people with lived experience of diabetes have become essential parts of the research process.

It’s exciting to look back on what we achieved, but even better to know we’ve laid the groundwork for an impact-driven 2024.

Partnership within our communities is essential to creating positive outcomes for everyone living with or affected by diabetes. That’s why Diabetes Action Canada (DAC) is pleased to announce South Riverdale Community Health Centre (SRCHC) as our first official Knowledge User partner. The relationship, focused around DAC’s Diabetic Retinopathy Screening program, brings together a wealth of expertise and experience to reduce the risk of vision loss or blindness for those at risk.

The DAC network is focused on fostering meaningful connections between patients, their caregivers, and researchers, enabling them to collaboratively develop research questions, plan implementation strategies, and inform knowledge mobilization efforts. The ultimate goal is to ensure research outcomes have a tangible impact on transforming healthcare practice and policy. To achieve this, DAC collaborates with a wide array of partners, including academic hospitals, Patient Partners, government entities, and community healthcare settings, such as SRCHC.

“As a Knowledge User, SRCHC is an integral part of DAC’s collaborative network, actively contributing to the advancement of patient-oriented research and the development of innovative approaches to diabetes in community settings,” says Tracy McQuire, Executive Director for Diabetes Action Canada. “This partnership gives SRCHC access to resources and expertise within the DAC network of researchers and organizations dedicated to improving diabetes management and care. We hope that through this collaboration we will see wonderful advances in how people with diabetes are supported and how care is delivered in community health settings.”

“For more than ten years, SRCHC has partnered with UHN to provide diabetes eye screening to low-income and marginalized individuals living with diabetes, enabling them to develop considerable expertise in operationalizing diabetes eye screening in community-based settings. The Diabetes Eye Screening Program (DESP), operated by SRCHC, is the top-performing tele-ophthalmology program in the province based on current fiscal numbers screened and total numbers screened since the programs started. SRCHC’s DESP has screened approximately 4,000 individuals since its inception,” says M. Ann Phillips, Director of Community Health & Chronic Disease at SRCHC.

 “We are excited to continue to partner with Diabetes Action Canada and Ontario Health to spread and scale the programs across the province and inform policies related to provincial-level diabetes eye screening and limb preservation work. We believe that by working together we will be able to enhance the health system and Ontario Health’s understanding of diabetes eye screening as an ideal case for population-level health management,” says Shannon Wiens, VP of Systems and Strategy at SRCHC.

Learn more about Diabetes Action Canada’s Diabetic Retinopathy Screening program.

In October, members of the Diabetes Action Canada team spent several days in Montreal as part of the Vascular 2023 conference. This event brought together healthcare providers, researchers and Patient Partners from the diabetes and heart health communities for several days of education, information-sharing and networking.

“At Vascular 2023 we had excellent opportunities to connect with the community to discuss the great work of DAC, the importance of patient-oriented research and the impact of Patient Partnership on healthcare delivery,” said DAC’s Executive Director, Tracy McQuire said DAC’s Executive Director, Tracy McQuire.

DAC’s Lead of Patient Engagement and Knowledge Mobilization, Linxi Mytkolli, was not only there to support our Patient Partners, but also as a speaker sharing her own lived experience with type 1 diabetes. She was part of a panel discussing the Connect1d Canada and Type 1 BETTER programs—two resources focused on improving research outcomes for the type 1 diabetes community. “I had the honor of being on a panel discussing the integration of patient perspectives into type 1 diabetes clinical research. This experience reinforced that research is not just about data; it’s about people. Collaboration with individuals with lived experience is key to making our research more equitable and impactful,” she says.

Our researchers were well-represented throughout the conference, including presentations from Drs. Bruce Perkins, David Campbell, and Sonia Butalia. Dr. Campbell also screened his team’s short film, Low, which highlights the experience of living with diabetes while homeless. The film was developed alongside a team of people with lived experience who were involved every step of the way—from conception to production.

Patient Partner, Al Martin, participated in a foundational science presentation. He shared his personal journey as a way to put a human face on the work being done in the lab. “Witnessing Al’s compelling story about living with diabetes and obesity left a profound impression on me,” said Mytkolli. “His dedication to improving the healthcare system for future generations is a testament to the power of lived experience in advocacy.”

DAC’s Communications Lead, Krista Lamb, was active throughout the conference. She shared photos and updates from all DAC-related events on our social media channels and attended many meetings and sessions to advise on effective and empathetic science communications. This was her first in-person, out-of-town conference since the pandemic and it was a reminder of the need to support different learning styles and access levels. “ I met new people, was inspired by conversations, and was able to have meaningful interactions with so many. That said, I believe there are many wonderful reasons to continue to have hybrid meetings (or fully online learning sessions) to support EDI and ensure access to education to more people. We have a lot of options now that grew out of pandemic pivots, which I think will continue to improve the way we offer education in healthcare.”

As Diabetes Action Canada’s focus on digital health solutions deepens, the organization is pleased to welcome our new lead for these projects: Dr. Alexander Singer.

Dr. Singer has always been curious. He was the kid who raised his hand in class-and in life-knowing that if he didn’t understand someone else probably didn’t either. In school, he realized this need to know how and why things worked was a good basis for a career in science.

Now a family doctor and the Director, Office of Research and Quality Improvement at the University of Manitoba, as well as the Director of the Manitoba Primary Care Research Network, Singer’s questions often revolve around how to improve healthcare for everyone.

At the start of his career, he had thought it was archaic that doctors were still using paper files and noted how the ability to collect data electronically could not only improve outcomes for the person across from him, but for the entire community and beyond. When Manitoba started looking into adopting electronic medical records (EMR), he was pleased to be asked to contribute to the process.

Singer then started working on research projects looking into how EMR data could be used appropriately and effectively. His work has helped researchers in the province use de-identified EMR data to understand prescribing patterns, billing trends, and overall health outcomes. These findings allow the healthcare system to better understand what conditions people are managing and how to better optimize the care process for everyone.

This improved understanding of the health landscape has inspired Singer’s additional work in quality improvement in clinical care. “When we have the data, we can sometimes see where there’s a gap and care is not being applied equitably or where folks over here are getting optimal care and folks over here are missing some things,” he says. His work looks at ways to close those gaps.

When Dr. Michelle Greiver recently stepped down from her role leading Diabetes Action Canada’s National Diabetes Repository and digital health projects, she recommended Singer as a potential replacement. Greiver had been a collaborator of Singer’s and they had worked together on many projects in primary care research. He also liked that the role allowed him to bring a quality improvement lens to diabetes care.

“Diabetes in particular is a really useful exemplar condition because it touches so many different systems. It’s chronic, and it represents a spectrum of disease,” he says. “The way that you might try to improve primary care delivery for some other condition looks very similar to how you might try to improve the care for diabetes. So if we can get it right for diabetes I think there’s a reasonable hope that we can improve care for other conditions in primary care.”

This broad spectrum of ways people with the condition engage with the healthcare system offers ample opportunities to use EMR data to make the experience a better one. Singer is excited to learn more about the ways DAC researchers are using data, and to spend time with the Patient Partners who are foundational to each project.  

Written by Krista Lamb

Dr. Michelle Greiver recently completed her five-year term as Cheesbrough Chair in Family Medicine Research at North York General Hospital, where she led the University of Toronto Practice based Research Network, UTOPIAN. As she wrapped up that role, Greiver has also stepped down from leading Diabetes Action Canada’s National Diabetes Repository.

While she will continue in her role as a family physician and begin a new position as Research Program Advisor with the University of Toronto, Greiver remains, as ever, incredibly passionate about the importance of data-based research to improve health outcomes for all Canadians.

“I’m most proud of the ability to see beyond today’s difficulties to a better world. And that’s through things like big data used safely and securely in the public benefit; we must be careful about managing corporate interests in data. Data must benefit people through research, and through innovation,” she says. “Data can  really make a difference and improve care for people living with diabetes, both immediately and for the future”.

Greiver has also led important initiatives for responsible health data use.  This included her work with DAC, where she championed Patient Partners having a role in data governance and stewardship.  Patients were key in deciding  which research projects were granted access to data in the National Diabetes Repository for research. She is hopeful that, moving forward, good governance of data will make it easier for it to be used to support the greater good.

“I would like the next generation to have much better access to data. We need to strengthen and reorganize our data access systems; these can require   redundant applications to multiple research ethics boards.  Goals include having more researchers ethically use it, and ensuring that patients have a better idea of what’s done with their data–nothing about me without me,” she says. “I would strengthen patient involvement in big data projects so patients have a role in guiding what’s done with the data, and also monitoring how these data are accessed, used, managed, shared, etc. The strongest barriers should be for commercial uses, where there is no patient involvement and where this is done for profit. Currently, there are sometimes less restrictions for these types of uses and more restrictions for uses in the public benefit. This needs to be rebalanced.”

Finding that balance is something Greiver will continue to advocate for in any future roles. She believes strongly that locking away data does not advance health. “There’s a need to protect the public by conducting good research in ways that protect privacy, and by conducting good studies and using the data that we have.”

Greiver will be missed by the entire team at Diabetes Action Canada, who have learned much from her expertise and benefitted greatly from her leadership on the National Diabetes Repository.

“Michelle has always understood and advocated for the use of primary care data in research.  She has helped build our National Diabetes Repository to help answer important questions and concerns articulate by our Patient Partners to better understand diabetes complications management and treatment,” says Diabetes Action Canada’s Executive Director, Tracy McQuire.   “DAC now has an extremely valuable resource available to all our members that is patient-led and fills an important gap in understanding our diabetes impacts individuals in many different ways.”

Written by Krista Lamb