Author: Linxi Mytkolli

Have you ever wondered how diabetes researchers decide what to explore and investigate? Or what it’s like to participate in a study? Have you ever had an idea you cared about and wished someone could research? There are many different types of studies with very different commitment levels.

Join us for a webinar that will explain how your lived expertise of diabetes can inform research. Find out how you might be able to participate in studies tailored to your interests or even co-design or co-lead studies.

Patient-oriented research is a practice that aims to centre those with lived and living experience in all the research processes, from deciding what question to explore, to collecting the data, writing the report, and sharing the findings. Learn from researchers, and people living with diabetes about how they are co-leading important patient-oriented research projects and how you can get involved too.

Meet Our Speakers

Dr. Bruce Perkins – Professor, University of Toronto Department of Medicine

Bruce Perkins’ research platform, research leadership, clinical practice, and advocacy work has focused entirely on strategies to improve the lives of those, like himself, living with type 1 diabetes. His research has focused on early biomarkers and mechanisms of diabetes complications, and complications prevention through artificial pancreas technologies and add-on-to-insulin drug therapies. Among leadership in other projects funded by CIHR, NIH, and JDRF, he sits on the Executive of the historic but ongoing “DCCT/EDIC” Study (Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications), and co-leads the Innovations in Type 1 Diabetes Goal Group within the Diabetes Action Canada national patient-oriented research strategy.

Dr. Carly Whitmore – Assistant Professor, McMaster University

Carly Whitmore is a Registered Nurse and Assistant Professor in the School of Nursing at McMaster University. Through an applied program of research, Carly is leading projects that aim to optimize and integrate care for those living with co-occurring chronic conditions and mental health challenges. With experience as a psychiatric and mental health nurse, Carly draws upon stories and experiences to guide her co-designed research.

Linxi Mytkolli – Lead of Patient Engagement and Knowledge Mobilization

Linxi Mytkolli started with Diabetes Action Canada as a Patient Partner for over a year, she is now excited to join the team in her new capacity as the Lead of Patient Engagement and Knowledge Mobilization. Prior to joining DAC, she was a Senior Program Manager supporting a national suicide prevention and life promotion program with the Mental Health Commission of Canada. In this work, she focused on centering the wisdom of those with lived and living experience, while also translating findings from academic partners into tangible tools for the participating communities. In addition to her leadership in the mental health space, Linxi has more than six years of experience leading national programs in urban research, youth wellbeing, and sustainability in healthcare. Linxi holds a Bachelor of Science in Biopharmaceutical Sciences (uOttawa) and a Master of Science in Sustainability Management from the University of Toronto

Krista Lamb – Author and Science Communicator

Krista Lamb is a science communicator who specializes in helping translate complex topics into interesting and understandable stories for diverse audiences. Her first book, Beyond Banting, was released in 2021 and went on to win the Science Writers and Communicators of Canada Book Award in the general public category. In addition, Krista is the producer and host of multiple podcasts, including the award-winning Diabetes Canada Podcast.. Throughout her career, she has written extensively about health and research topics and she currently provides communications support for a number of organizations.

This article, by Krista Lamb, was originally released as part of the 100 Lives of Insulin project by the Insulin to Innovation Consortium. Visit their site to read more inspiring profiles of people who have been affected directly and indirectly by the discovery of insulin, and to learn about upcoming events. This article is reprinted with permission.

For Dr. Diana Sherifali, her mother’s diagnosis with type 2 diabetes is forever tied to the 1984 Olympics. That year was a big one in her house, as the event was hosted in Sarajevo. Her family is from the former Yugoslavia and seeing the event held in their homeland was a source of great pride for the family. “What took away from some of the pride and joy was my mom’s health issues,” recalls Sherifali.

Even as a young girl, Sherifali took helping her mother manage her health issues seriously. She attended medical appointments to translate, and learned how to prepare foods that would help her mother stay healthy. This lived experience of being a caregiver to someone with diabetes inspired an interest in nursing, and eventually led her down the path of diabetes research.    

“I always saw myself going into occupational nursing. If you asked me whether I was going to be a researcher, I would say no,” says Sherifali. However, her personal connection to the disease and her desire to better understand it nudged her in that direction.

After landing what she calls a “dream job” in a diabetes clinic, Sherifali encountered a complex case. Discussing it with the endocrinologist on staff, she realized there were many questions he couldn’t answer—there wasn’t research in that area. The doctor suggested she could go find the answers. “I thought, what does he mean by find the answers? But, really, what he was doing was planting the seed to say, “Well, if you can’t find the answer, do the study,” she says.

Sherifali sat with the idea for several days. Diabetes Nurse educators who do research are rare, and there were few role models for her. In the U.S. it was more common for diabetes nurses to pursue PhD and postdoctoral work, but it was relatively rare in Canada. Still, she was intrigued by the idea. She decided to pursue a Master’s degree at McMaster University in Hamilton with an eye to doing advanced clinical nursing if research didn’t work out. Once she got into school her desire to ask questions and her program’s emphasis on problem-based learning clarified that her heart really was in research. “I love the curiosity piece, I think that’s what pushed me into graduate work. Research is being able to be curious. In my role, I can constantly ask questions.”

As luck would have it, she was also working and studying just down the hall from one of the world’s leading experts in clinical research, Dr. Hertzel Gerstein. After completing her Master’s and PhD work, she sent Gerstein an email, asking if he would consider her as a postdoctoral student. Sherifali was the first nurse to ever hold a post-doc role in his lab. “Collectively, we came up with a program of research that really spoke to my knowledge, my skills, my experience,” she says, noting that the program focused on self-management in diabetes. 

The partnership has continued long past Sherifali’s postdoctoral position. She and Gerstein continue to work together and Sherifali has made a name for herself as one of Canada’s most recognized diabetes nurse researchers. She has focused much of her work on self-management, including updating the Clinical Practice Guidelines to better support self-management at the patient, clinical and population levels. 

She has also done important research looking at diabetes and health coaching – in particular supporting people with diabetes to self-manage in the community. Building on her research done over the past decade, her diabetes health coaching trial found improvements in blood sugar control, as well as in quality of life. “Coaching can improve peoples’ lives and their diabetes control by offering regular support and timely insights,” she explains.  

Sherifali’s work is also drawing attention to the unique challenges of an aging population living with diabetes and frailty. While many care providers are adept at managing type 2 diabetes, the unique challenges of type 1 diabetes are often unknown to them. Once a person with type 1 diabetes can no longer self-manage, they may move to a residence where no one has the skill or knowledge to support them. “In retirement homes or long term care, this may get overlooked and people say, ‘Well, they’re on intensive insulin therapy, take them off and put them on oral medications.’ That’s a lethal combination for someone with type 1 diabetes,” says Sherifali. Her research has also supported guidelines for nutrition and physical activity in frail older adults.  

While her research area spans all types of diabetes, Sherifali’s goal of helping and supporting others is just as clear as it was when she was a little girl translating for her mother at the doctor’s office. She hopes her work will make life better for those living with diabetes and that, as a research nurse, she will inspire others in the profession. 

— Written by Krista Lamb

This past year, Dr. Paula Rochon and Rachel Savage, Ph.D. from the Women’s Age Lab at Women’s College Hospital received funding for their Healthy Cities Grant. The proposal, supported by Diabetes Action Canada, received six years of funding from the Canadian Institute of Health Research (CIHR) and the Public Health Agency of Canada (PHAC). The research team will study Naturally Occurring Retirement Communities (NORCs). NORCs are a building or community where a high proportion of older adults reside but which was not originally designed to support their needs.

This research study will work to find solutions to improve aging in place opportunities and to ensure that older adults have a voice and choice over the support they receive as they age. Older adults overwhelmingly want to age in their own homes, but many are unable to do this when their safety and independence is compromised by loneliness, social isolation, declining health and reduced income.

“By being around other older adults and creating a shared sense of community, NORCs help alleviate concerns like loneliness or a lack of social engagement,” says Dr. Rochon.

The project puts an emphasis on building social connections, developing opportunities for physical activity within neighbourhoods and providing healthy food environments, all of which are important to improving the health and longevity of older adults living with diabetes, and to supporting the prevention of type 2 diabetes in those at risk.

Three support service models will be implemented and studied in ten NORC buildings in Toronto and Barrie, Ontario. The team’s preliminary data already shows that a considerable proportion of NORCs are in low-income and racialized neighbourhoods, which will be an important consideration. The team will also factor sex and gender, as well as age, ethnicity and socioeconomic status into the potential implementation of any NORC solutions.

Women’s Age Lab, is working with partners including the NORC Innovation Centre, the City of Toronto, and the City of Barrie. By developing practical tools, the research team and its partners on will fill important knowledge gaps to support the spread and scale of supportive services in NORCs across the country and elsewhere.

Learn more about Women’s Age Lab’s work here.

In May, Dr. Rayzel Shulman and her team published the KiT Protocol in BMJ Open. This protocol is another step towards successfully moving forward the Keeping in Touch (KiT) program, which aims to support youth as they transition to adult type 1 diabetes care.

The transition from pediatric to adult care is one of the most fraught in the type 1 diabetes journey. As children, those with type 1 often have their health care supported and managed by their parents, and they have typically grown comfortable with their medical providers and team over many years.

At 18, when they must transition to adult care, they are often managing a host of other transitions—the start of post-secondary education, leaving home for the first time, managing first jobs or first romances. An enormous change to their healthcare team may result in a disconnect that leads to missed appointments, disinterest in diabetes management, and even a decision to simply stop receiving regular care.

All of this can lead to poor health outcomes, which is why researchers have been investigating ways to make these transitions easier for everyone. The idea to use digital solutions to improve the experience led to the development of KiT.

A multisite, randomised control trial, KiT is being run in four pediatric diabetes clinics in Ontario and two in Quebec. Co-PI, Dr. Meranda Nakhla, a pediatric endocrinologist at the Montreal Children’s Hospital, is leading the study in Quebec. KiT uses text-message-based communication to encourage education, follow up and care. Shulman, a pediatric endocrinologist at The Hospital for Sick Children (SickKids) in Toronto, notes that text messaging is an effective way to engage with adolescents and young adults. “This population is very invested in texting,” she explains, noting that it reduces many of the barriers to communication that come when leaving voice messages or asking someone to use an app.

Working with co-PI, Dr. Joseph Cafazzo, at the Centre for Digital Therapeutics at UHN, and Memotext, a platform for co-creation of digital patient engagement, Shulman and her team developed the program. Research participants are recruited within four months of their last pediatric visit. They are then randomized into a group with either no intervention or one where they are using KiT.

The group using KiT is provided with a personalized education program developed using online transition resources identified by co-PI, Dr. Anne-Sophie Brazeau. Participants receive regular text messages about topics related to transition to adult care based on data collected from the Readiness of Emerging Adults with Diabetes Diagnosed in Youth (READDY) tool. This enables the participants to receive support in identified areas they need most. KiT also gives an option for the participants to receive support in topics that are of interest to them.  Patient Partners, including lead partner Marley Greenberg, helped to ensure the messages were relevant, as well as written appropriately for the age group they were meant to serve. “The text messages have a youthful flavour,” Shulman notes, “There are lots of emojis, but they also contain links to trusted sources of information.”

Alongside  messages with useful tips, KiT helps coordinate ongoing diabetes care. Scheduled texts come in to check if the final pediatric visit has been booked, and if the new adult appointment is scheduled. It also provides reminders about upcoming scheduled follow-up visits. Shulman notes that this isn’t just an appointment reminder, but much more in-depth: asking participants if they have completed any required  labs before their visit, uploaded data from their pump and/or sensor, if they have registered for a patient portal (if one exists at their clinic), and provides other  specific information such as contact information for  the adult endocrinology clinic they will be attending. KiT can explain what to expect at the clinic, as well as allow you to jot down notes or questions that it can remind you about before  your scheduled appointment.

And if the participant has questions throughout the year? KiT is set up to recognize keywords, like hypoglycemia or alcohol, and send trusted information sources when the user texts a question that matches a keyword. This helps engage the young person and provide them with vetted resources to support their needs.

So far 57 young adults are participating in the study and the team is hoping to recruit a total of 210 within the next year. The team is also starting to study the implementation process. Co-PI, Dr. Laura Desveaux, an implementation scientist at Trillium Health Partners, will be assessing all data collected and interviewing participants to learn which components of KiT were used most and led to better outcomes and why.. This type of detailed assessment will help determine the next steps for the program as it develops and for understanding the final results of the KiT study.

Additionally, to determine the cost of adapting and implementing KiT, co-investigator Dr. Valeria Rac affiliated with University Health Network (UHN) and Diabetes Action Canada, is leading the cost of implementation analysis. This will help the team understand the costs associated with implementing and scaling KiT in a real-world clinical setting.

“The project as a whole is looking at self-efficacy as the main outcome and diabetes-related stigma and readiness to transition, and measures of glycemia as secondary outcomes,” says Shulman. “We hope that in the end this tool can help manage some of the gaps currently found in the process between pediatric and adult care, and support better long-term outcomes for young adults living with type 1 diabetes.”

Written by Krista Lamb

Recently, Dr. Calvin Ke, a clinician-scientist from the University of Toronto’s Department of Medicine and a Diabetes Action Canada Researcher, has been focusing his work on improving diabetes care in Ontario overall, and in particular for those who are diagnosed with type 2 diabetes (T2D) before the age of 40.

This particular group, who have young-onset T2D, are at a greater risk of developing complications, requiring additional services and needing longer and more frequent hospitalizations. Ke and his team are looking at how to improve the care pathway for these people with diabetes to ensure they are living healthier lives.

To do this, the team is looking to Hong Kong and a project that is already showing success. In Ke’s recent publication, Team-Based Diabetes Care in Ontario and Hong Kong: A Comparative Review (published in Current Diabetes Reports), he was able to look at how the province could take some of the ideas already being used in Hong Kong to improve care in Canada. Looking deeply at both systems, he saw a great deal of opportunity for meaningful change to happen.

“At Ontario’s Diabetes Education Centres, diabetes educators provide expert guidance to help people learn how to manage their diabetes. As more and more people are diagnosed with diabetes, we must ensure that these Centres are equipped to meet the changing needs of our diverse population. We can learn valuable lessons by comparing how diabetes care is provided in different countries,” he says. “Hong Kong’s innovative model was developed by Professor Juliana Chan at the Chinese University of Hong Kong. This model weaves diabetes education into a multicomponent program that greatly improved health outcomes while reducing costs. We have a tremendous opportunity to strengthen our Diabetes Education Centres by adapting these innovations to provide better and more personalized care, especially for those with young-onset type 2 diabetes.”

Currently, Ke is working on several projects aimed at incorporating these concepts into ways to improve practice. He was recently awarded a Catalyst Grant from the Novo Nordisk Network for Healthy Populations at the University of Toronto to work on personalized care pathways for those with young-onset T2D in Ontario’s Peel Region. In this project and the others he is involved in he sees a vital role for patient partnership.

“Patient Partners have an enormous role to play at every step of our research. Patient Partners share their lived experience to help researchers understand the current needs and gaps in diabetes care. In this manner, Patient Partners work collaboratively with researchers to ensure that interventions are adapted in an appropriate way that responds to the community’s needs and bridges existing gaps,” he says.

You can learn more about the work of Ke on his website and in this recent profile by the Banting & Best Diabetes Centre at the University of Toronto.  

Story written by Krista Lamb

While Patient Partnership in research is at the core of the Diabetes Action Canada mission, it was clear from the inception of the organization that having people with lived experience at all levels of our programming would be an essential element of our success. Now, as we move into DAC 2.0, that commitment to patient partnership in governance continues to grow.

“For some organizations, people with lived experience sit on committees and are part of research teams, but they are not at the head of those tables. For Diabetes Action Canada, we wanted to see lived experience represented throughout our teams, which includes the Steering Council that leads our direction, and our Research Governing Committee” says Tracy McQuire, Executive Director at Diabetes Action Canada.

The Diabetes Action Canada Steering Council is led by Dr. Cindy Bell, who is the mother to two daughters with type 1 diabetes. Dr. Bell is also a highly-regarded scientist who provides a seamless blend of those two worlds.

Patient Partner, Pascual Delgado, is also a member of the Steering Council, and in 2023 was named Chair of the Network’s Equity Diversity and Inclusion Committee. Originally from Cuba, Delgado, who lives with type 2 diabetes, is passionate about raising awareness about diabetes in immigrant communities where there may be barriers to accessing care. He feels it is essential to include Patient Partners in governance given their lived experience, and also knowing that many will have held these types of management roles in other areas of their careers. “They can contribute their novel or never-considered expertise in the DAC community,” he says. “Most importantly, if they come from other cultures or diverse backgrounds that experience can enrich our research, aims and projects.”

For Christina Mulchandani, the new Co-Chair of the Research Governing Committee, living with type 1 diabetes since 2016 has made her aware of the need for lived experience in organizations dedicated to diabetes. With more than 18 years of employment in human resources she also brings very direct career experience to the table. “My diagnosis transformed my direction in life,” she says. “Despite the necessity to proactively manage my diabetes, I am driven to be involved on a larger scale to help my community living with diabetes.”

This same drive fuels Patient Partner, Sylvie Dostie, who was diagnosed with type 1 diabetes when she was five years old. A member of the DAC Steering Council and recently elected chair of the Francophone and Immigrant Patient Circle, she sees the feedback loop between people with lived experience and researchers as critical. “We are the intermediaries between patients and researchers. This can make communication easier for everyone,” she says of the governance link.

Patient Partner, Dana Greenberg, agrees that this link is essential. As an experienced fundraising professional and a person living with type 1 diabetes, she is keen to bring her voice to developing policies that will support the aims of the organization. Having been a co-PI on several research programs and a long-standing Chair of the DAC Collective Patient Circle, she knows the many diverse roles Patient Partners can play and how governance can support them appropriately. “It is important to me to continue to help develop policies related to meaningful patient engagement, “ she says.

“We are lucky to have such an engaged group of Patient Partners interested in supporting our work, and we are looking forward to seeing where their direction leads us,” says McQuire.

Story written by Krista Lamb

For Seeta Ramdass patient engagement is critical to the success of any health care project. That’s one of the reasons she was excited to learn about Diabetes Action Canada, where she would have the opportunity to not only play an active role in research projects, but also to use her career experience to support the organization’s governance. Now, Vice Chair of the DAC Steering Council and a participant on multiple research and project teams, she is able to make a real impact on health outcomes for people living with diabetes.

Initially, however, she was skeptical. “Working in healthcare, I’ve advocated for patient engagement and patient partnerships in research for decades, but I still felt like patients were not being engaged very authentically in research. It was still very research-heavy, science-heavy and organizationally heavy, and the patient was really a token. I was curious if DAC was authentically integrating patient perspectives, not only from the point of view of managing the condition itself, but also from the socio-cultural context and the diversity of patients. Were diverse patient voices going to be engaged?” A colleague, who is also from a visible minority, shared his own experience with DAC and encouraged Ramdass to get involved.

“He said, “no, I think you’ll be happy with what you find.” And he was right. I found that wow, yes, there is a diversity within DAC teams in terms of leadership and research. But there was also a nice diversity in terms of the patients and the community members that have been recruited and involved. When I started going to meetings with researchers and hearing projects, yes, the patent’s voice and input was absolutely valued from the cultural context, and the interest and commitment to being socially inclusive was already in place. And I love that everyone I’ve met at DAC so far is really open to learning and they’re embracing going forward and trying to implement it. That authenticity matters.”

As a person living with type 2 diabetes, a condition with a higher prevalence in the South Asian community, Ramdass knows that token engagement does not lead to impact. She also knows that the research process is not always one that looks at diabetes through an equity lens. That knowledge drew her to take on a project with Dr. Joyce Dogba’s team, which invited her to go through the team’s research papers and provide her feedback on ways that the work could be done with a stronger EDI lens. “I came up with 15 recommendations and pointed out where there were opportunities to ensure that equity, diversity, inclusion, and accessibility, were considered in the methodology of the research, in the analysis of the research, and then in how the findings were reported,” says Ramdass. “And the team is using that input to do things. I can hear it in the way Dr. Dogba is phrasing questions, adjusting her language and her communication and terminology to the audience of patients that we’re dealing with – she is truly a model of an inclusive DAC researcher with her commitment to EDI in research! To me, that was great because we’re contributing to this work as patients and to know it is being implemented, often in real time, is valuable.”

This exchange of information is something that appeals to Ramdass. She believes that while it’s important to have voices at the table, everyone has to be engaged in a meaningful conversation for there to be real impact. She also likes that the team at DAC is respectful of the time a person has available, and the different things they may be dealing with. “Respecting people’s different religious holidays, respecting the pace at which people communicate, some people take a little longer to phrase their thoughts because we have different sociolinguistic ways of expressing ourselves, different literacy levels, different language  competencies, because not all of us are necessarily anglophones or francophones, we may be  allophones or speak Indigenous languages. I love that there is patience with allowing people to express themselves, or to not express themselves. If someone’s not comfortable addressing a topic, we understand and recognize that their silence is telling us something as well,” she says.

Moving forward, Ramdass has big goals for ways that she wants DAC to focus on. She would like to see a commitment to make research publication language more culturally sensitive, inclusive and respectful. She worries that the blaming language in some of the publications she has seen adds to further marginalization of groups. She would also like to see broader communication options for those who are not comfortable speaking in English or French, and more work done to support vulnerable populations. She is encouraged that DAC shares these commitments and looks forward to helping guide the process of implementing them more widely.

Article written by: Krista Lamb

Canadian and Dutch researchers are examining whether timed lifestyle changes can help restore the 24-hour rhythm of people at high risk of developing type 2 diabetes.

There are many Diabetes Action Canada members involved in this project, including our Scientific Co-Lead, Dr. André Carpentier.

Read the full story here.