Author: Linxi Mytkolli

Recently, Diabetes Action Canada lost one of our long-standing Patient Partners.  Jaime Broja was an active member of our community and a passionate advocate for diabetes research.

Jaime was the first Patient Partner for the Diabetes Research Group at the Centre de recherche du CHUS  in Sherbrooke and his involvement helped to shape how that team saw patient partnership. He was a member of Diabetes Action Canada from the very beginning and his contributions were deeply meaningful to our work.

“Jaime was a strong advocate for diabetes research, especially on the prevention of this disease,” says Dr. André Carpentier, the Scientific Director at Centre de recherche du CHUS. “He passed away at home on October 31^st, surrounded by his loving wife, his two sons and his daughter. We miss him.”

In the November Diabetes Awareness Month Globe and Mail supplement, Dr. Gary Lewis is interviewed about the 100th anniversary of the discovery of insulin and the importance of patient-oriented research.

You can read the article on the Globe and Mail website now!

Connect1d Canada, a digital platform that allows those with type 1 diabetes (T1D) to easily learn about and participate in innovative research programs from across Canada, is pleased to announce their partnership with the U.S.-based T1D Exchange, a non-profit organization that drives meaningful research and innovation in the treatment of type 1 diabetes.

The T1D Exchange Registry is an online research study open to people living with T1D in the US.  To date, the Registry has more than 16,000 members. The Registry tracks patient-reported disease progress over time, and also connects patients to other research opportunities for their consideration.

This partnership allows both organizations to share learnings and expertise, and to discuss strategies, successes and challenges in supporting better outcomes for people with T1D across North America. The teams are using this collective knowledge to improve the experience for all those with T1D who would like to take part in research.

“T1D Exchange has highlighted key challenges faced by people living with Type 1 diabetes that must not be ignored. I am excited that this partnership with Connect1d Canada will be a key step in better addressing the needs of Canadians with T1D,” says Dr. Peter Senior, an endocrinologist, Director of the Alberta Diabetes Institute and the Charles A. Allard Chair in Diabetes Research, who is the scientific co-lead for Connect1d Canada.

“We are excited to join forces with Connect1d Canada in an effort to amplify both initiatives and to increase participation in research,” said Wendy Wolf, PhD, VP of the T1D Exchange Registry. “Collecting the voices and experiences of those living with T1D provides a more complete picture than relying on clinical data alone.”

The Connect1d Canada platform was developed in partnership with those living with T1D and is supported by the Diabetes Action Canada research network. Diabetes Action Canada’s mandate ensures that every research program it supports has people living with diabetes at the table from conception to implementation. For Connect1d Canada, this has meant intensive consultation with the T1D community and having Patient Partner Kate Farnsworth as a co-lead on the project.

Working with the T1D Exchange will ensure a range of new and diverse experiences and opinions from across North America can be considered as the organizations work towards the shared goal of accelerating the T1D research process, especially in groups that are not typically engaged in research.

Researchers and those with T1D in Canada can now register with Connect1d Canada.

People with T1D in the U.S. can register with the T1D Exchange.

Media inquiries from Canada:                                        

Krista Lamb
Communications Lead, Diabetes Action Canada
Kristalamb@gmail.com
647-403-5627

Media inquiries from the U.S.:

Deborah Taylor
Director of Marketing, T1D Exchange
dtaylor@t1dexchange.org
617-671-0450

About Connect1d Canada

Connect1d Canada is a digital platform that allows those with type 1 diabetes (T1D) to easily learn about innovative treatments from across Canada while contributing to clinical research in the areas that matter most to them. Connect1d Canada also allows researchers to recruit and engage with patients with greater ease, thereby improving the research process by accelerating recruitment and opening up research opportunities to a more diverse group of Canadians living with type 1 diabetes. Developed and designed with our patient-partners, Connect1d Canada was created by and for the T1D community with the goal of revolutionizing the way research is conducted.

About Diabetes Action Canada

Diabetes Action Canada is a pan-Canadian research organization, launched in 2016, funded by the Canadian Institutes of Health Research’s Strategic Patient-Oriented Research program, non-profit organizations (e.g. Diabetes Canada, JDRF), and private sponsors, over 5 years. Diabetes Action Canada focuses on bringing patients, their caregivers and researchers together to identify the health concerns of those living with diabetes and to co-create research projects that address these concerns. We partner and collaborate with university research teams across Canada, non-profit organizations such as JDRF and Diabetes Canada, and provincial governments to plan, execute and evaluate these research projects so we can improve patient outcomes and experiences.

About T1D Exchange 

T1D Exchange is a leader in harnessing data to advance type 1 diabetes (T1D) care and outcomes by driving collaborative change. Through real-world evidence and clinical data collection and analysis, our novel insights are identifying gaps in data and redefining best practices to improve the lives of those living with T1D. T1D Exchange actively supports quality improvement and innovation through its Quality Improvement Collaborative, patient registry, and data-oriented research services. Through a knowledge–sharing and collaboration-focused approach, T1D Exchange is accelerating real-world impacts by providing clinicians, researchers, industry partners and advocates with the resources and services they need for better decision support and population health management. A non-profit organization, T1D Exchange was established in 2010 with ongoing support from The Leona M. and Harry B. Helmsley Charitable Trust.

About the T1D Exchange Registry

The T1D Exchange Registry is a research study conducted online over time, designed to foster innovation and improve the lives of people with T1D. The platform is open to both adults and children with T1D living in the U.S. Personal information remains confidential and participation is fully voluntary. Once enrolled, participants will complete annual surveys and have the opportunity to sign up for other studies on specific topics related to T1D. The registry aims to improve knowledge of T1D, accelerate the discovery and development of new treatments and technologies, and generate evidence to support policy or insurance changes that help the T1D community. By sharing opinions, experiences and data, patients can help advance meaningful T1D treatment, care and policy.

The T1D Exchange Registry is simple to navigate, mobile and user-friendly. For more information or to register, go to www.t1dregistry.org.

By Krista Lamb

For Frank Tang, it was taking care of his elderly mother and helping her manage her type 2 diabetes that inspired him to get involved with research. She had lost a toe, developed diabetic retinopathy and was managing a wealth of complications. This meant Tang was often called on to assist with her many appointments, to manage her medications and to ensure her health care was properly managed.

This experience opened his eyes to what it was like to live with type 2 diabetes, which helped when he received his own diagnosis a few years ago. When he learned about research projects he could participate in at McMaster University in Hamilton, ON, he was eager to get involved. He wanted to learn ways to better manage the condition, as well as to support others.  “At McMaster, their major focus is on community, and I think that’s a huge departure from the traditional research that people have done.”

Tang has become an active Patient Partner in programs supporting older adults with diabetes. “Community care is very important here. There are people for whom English is not their first language who have diabetes, but they’re not aware of the care, management and attention they need to put into it,” he says. There is also a lot of misunderstanding about the condition. “Being of Chinese background, I have seen that  diabetes is always considered with stigma. You don’t want to talk about a family member having diabetes. There is this stigma attached to it, we don’t talk about this thing.”

For Tang, an understanding of the cultural community and their views on diabetes is needed to enact real change. While working with the Diabetes Action Canada Aging Community and Population Research program, he has been able to help researchers like Drs. Maureen Markle-Reid and Jenny Ploeg by sharing his experience as a person with diabetes and a caretaker of a parent who was not fluent in English. He knows that it can be frustrating for older adults to manage their care when they feel they are not understood, and he wants to be part of research aimed at changing this.

Tang also wants to help physicians understand that they need to meet their patients where they are at. For example, he has seen doctors advise an older adult non-English speaker to track their blood sugars using a computer spreadsheet. “It ain’t gonna happen,” he says with a chuckle, noting that many patients will need to rely on a family member to help with the spreadsheet, which is a huge barrier. “After a while, it gets very tiring to get someone to help with the recording. Now, what happens when you have to do the all the recording yourself?” For many older adults, computers are not easy for them to navigate. Add in a language barrier and this therapy is bound to fail.

With his own parents, he recalls attending appointments about their health and seeing how overwhelmed they were. They did not speak English fluently and the doctors were often speaking in terms that were far beyond what they could understand. Tang was often there to take notes, ask questions, and translate, but when he was not there he saw how it could turn into a case of broken telephone. “They don’t want to be honest with the doctor that they don’t comprehend this,” he explains, noting that when it comes to medications and therapies this breakdown in communication can be quite dangerous.

Tang is committed to continuing this work and using his voice and unique personal experience to encourage change for all those living with type 2 diabetes. “Once you get over this hurdle of communications, they start saying that, ‘Yes, we would like to find out what can be done, the medications that could help us,” he explains of older adults from diverse communities. It’s just finding the right way to open that door.

Interested in becoming a Patient Partner? Learn more here.

For Kamloops native Mike Alexander, a diagnosis of type 2 diabetes was a much-needed wake-up call. Alexander, an Indigenous artist and writer, had been struggling with addiction and an unhealthy lifestyle for many years when he got the news.

The diagnosis started Alexander on a journey to learn more about healthy living, changing his diet and exploring options for exercise that he might enjoy. After some consideration, he decided on the ‘go big or go home’ philosophy—beginning to train for a triathlon. “I deduced that I was good at self-destruction and I could apply myself wholeheartedly to that activity, and had done so for a long time. What happens if I decide to turn that energy into something positive?” he says. “I picked endurance sport because there’s an amount of pain involved with it that you learn to overcome through repetition. The mindset being that pain is something that is worth fighting through. I wanted to see what my midlife body could do. And not only is it physically amazing, but it’s had such a strong impact on my mental health as well. You keep on pushing to do the almost unbelievable and make it so that it becomes possible.”

A survivor of “the Sixties Scoop”, when many Indigenous children were removed from their homes to be raised in foster or residential care, Alexander was very aware that residual trauma and Colonialization had played a role in his health issues. Turning that energy towards something positive felt right, and a sport that allowed him to build towards a major goal was helpful.

“A full triathlon and Olympic distance triathlon, that seems like too much to comprehend. And life is kind of like that, as well. I can’t change everything overnight or over the course of a few months or years. This is a lifetime journey now. Diabetes is a lifetime journey. There’s things that I can do today.”

After his first triathlon in 2017, Alexander felt like he’d made the right decision to pursue the sport. “It’s a very rewarding experience to join the ranks of people that have dared to push themselves like that. And I found the people I spoke to have some pretty wild stories themselves. I think that people who are driven towards triathlon can come from some very colorful backgrounds, much like my own, and it’s so awesome to feel that brotherhood or sisterhood with other people who are just doing something phenomenal for themselves.”

Alexander has also become interested in diabetes research and advocacy in recent years. Speaking with friends at the National Indigenous Diabetes Association, he learned about opportunities to make a difference for the community. With his newfound coping mechanisms and the things he has accomplished, he wanted to share his story to encourage others who might be struggling.

“There’s two things really that I think about more than anything else. One being that I don’t see an awful lot of Indigenous triathletes and maybe I don’t need to. But what I do need is for Indigenous people to know that we can accomplish anything we set out to do, that there are no barriers in our heads that we can’t get over. There’s barriers in the world for sure, but if we turn inward to find that strength to do what seems like a good thing, then it can be done,” he says.

His second reason is to break down stereotypes that people may have about those of Indigenous background. “There are a lot of problems specifically with health care and delivery of services to Indigenous people that are based on stereotypes and racism. I want to show these folks that, “Hey, look at me, I’m not lazy, I’m not drunk. In fact, I’m doing something that you can’t even believe I’m doing. And I think that maybe that smashes the idea that we don’t have the same potential as anyone else or other folks.”

As a Diabetes Action Canada Patient Partner, Alexander is sharing his experiences as part of the Patient Circles, as well as speaking at events. He is hopeful that his voice can represent those at the table who have changed the trajectory of their diabetes diagnosis.

Interested in becoming a Patient Partner? Learn more here.

Diabetes Action Canada is devastated by the tragic discovery of the remains of 215 Indigenous children in an unmarked grave at the former Kamloops Indian Residential School in Tk’emlúps te Secwépemc Territory.

We are equally horrified by the uncovering of 751 unmarked graves by Cowessess First Nation in Saskatchewan. These graves, on the grounds of the former Marieval Indian Residential School, are presumed to be those of Indigenous children. These discoveries are a visible reminder of the harm of colonization on the lives of Indigenous families across Turtle Island.

These tragedies are also a reminder of the critical importance of meaningfully recognizing the traumatic role of Canada’s colonial past on the health of Indigenous people today and in the spirit of reconciliation, work alongside Indigenous communities to realize the Calls to Action laid out by the Truth and Reconciliation Commission, particularly during National Indigenous History Month.

Our Network believes in the critical importance of self-determination for Indigenous peoples at all levels of health and well-being. We support Indigenous-led research and its role in improving the health and well-being of First Nation, Inuit, Metis and Urban Indigenous communities. We will continue to support these programs and the important work of the Indigenous Patient Circle.

To our Indigenous colleagues, we are deeply sorry for the pain and suffering this has caused you.

Resources for those seeking support:

• National Indian Residential School Crisis Line (24-hour): 1-866 925-4419
• First Nations and Inuit Hope for Wellness Help Line: 1-855-242-3310 / hopeforwellness.ca

By Krista Lamb

In working-age Canadians, diabetic retinopathy is the leading cause of vision loss. This vision loss is often preventable with early detection and treatment. Even before the pandemic created a greater gap in services, 40% of people living with diabetes in Ontario had not had an eye exam for more than two years. Many of those people are from low income communities.

This gap is the reason Diabetes Action Canada researchers have developed Project OPEN.

The project uses medical records data to identify people who haven’t been screened, then community health reaches out to offer pre-screening, explains Dr. Michael Brent, a Diabetes Action Canada researcher and Associate Professor of Ophthalmology & Vision Sciences at the University of Toronto. “The patients loved it,” Brent says of the pilot project at Toronto’s Women’s College Hospital that validated the study idea. “If you can identify them, they will come.”

Project OPEN uses community health centres—currently 13 in the Toronto area with plans to expand to more than 70 across the province—to perform the outreach and arrange screenings.

A Diabetic Retinopathy Screening Program with mobile imaging equipment has been developed to target areas with low screening rates. Images and health data collected are uploaded to a secure server at Ontario Health.  Images and data are graded remotely by retinopathy specialists and care recommendations provided back to the primary care provider.

Having community health centers perform the outreach takes the burden off busy family practitioners, while ensuring that the work is done by health care workers that patients can trust. “They have really good primary care teams at the community health centres and they have good interactions with their patient population,” says Brent. “If they’re able to reach out to people living with diabetes we’re really hopeful that this will boost screening uptake for vulnerable populations.”

Currently, there is a disconnect with tracking eye exams. Electronic medical records don’t identify if someone has been screened and there is not a standard system to connect patients with eye care. Family doctors will suggest an eye check and may even provide information on local clinics, but they don’t have a method to follow-up or find out if the patient attended and what the outcome of the exam was. “Optometry is not required to send a letter back to primary care to complete the loop, so without the provincial health care data we really don’t know [if someone has been screened],” says Brent.

Project OPEN will be the first use of provincial digital health assets to enable population health management in Ontario. “It will allow patients to engage in their own health care, especially vulnerable populations, and it will build capacity for diabetic retinopathy screening,” he explains, while also building capacity for diabetic retinopathy screening through digital media and teleophthalmology.

“If we are able to identify diabetic retinopathy early enough, we can prevent vision loss and blindness, so screening programs are really important,” says Brent.

The project is being supported with funding from Fighting Blindness Canada. The Diabetes Action Canada Health Technologies and Assessment team, led by Dr. Valeria Rac, is also working on Project OPEN, learn more about their involvement in this recent article.

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.

Dr. Holly Witteman was seven years old when she was diagnosed with type 1 diabetes. She spent a month in the hospital learning to manage the condition; all of the hundreds of small tasks she and her family now needed to perform to keep her healthy and alive.

While her research does not focus solely on diabetes, her diagnosis has played an important role in her career and in her advocacy work.

A professor in the Department of Family and Emergency Medicine at the University of Laval in Quebec City, Witteman focuses on human factors engineering. She considers how information is presented to people and how to design systems that will work as intended for those who need them. “We look at what would help people naturally learn things and understand things and make them fluent,” she explains.

As a person living with diabetes, Witteman has consistently been an advocate for research that is developed and led by those living with the condition being studied. This patient-oriented research has allowed for those with firsthand knowledge of a chronic health issue to be part of the research process from the very beginning.

Her work in this area, much of it with the Diabetes Action Canada research network, has helped inspire others living with diabetes to become part of the research process. Witteman sees this as critical. “The reason I got involved with Diabetes Action Canada was because they needed someone who had expertise in how to involve people living with the condition in research about that condition, and I have always done that,” says Witteman. “That’s how you do things in human factors. If you develop tools for people without involving the people who are going to use them, then they’re not going to work.”

In her own life, she has been in the room when a researcher presented a new therapy or technology meant to improve the lives of those with diabetes. Often, extensive work had gone into developing this project, but it was immediately clear to Witteman that no one with diabetes had actually been involved in the process. She found this incredibly frustrating, as so much time and energy was being spent developing tools that were not appropriate for the end user – a problem that could have been solved by simply involving people with diabetes in the research process. “The lived experience of people with diabetes has historically not been well respected in research,” Witteman says.

While there have always been some researchers who included those with the condition in their work, it was a small number and even now she worries that if funders didn’t require patient involvement, many investigators would revert back to the way things were done previously. “I think it’s pretty fragile right now the way it’s set up,” she says. “It’s more work. I think it’s worth it. I think it’s very rewarding and allows for better research. But it takes more time. You have to build relationships.”

With Diabetes Action Canada, Witteman has been part of the development of a wealth of tools to help researchers better work with those living with diabetes, something she hopes will improve the process on both sides and make everyone feel more comfortable. She has also supported many patient partners who wanted to better understand how they could be involved in an effective way. If everyone understands the benefits, she believes the extra effort will be valued.

Witteman has shied away from working exclusively in diabetes, however, as she knows that living and working with a condition can be exhausting. “I spend all my life coping with it, and it already occupies a large proportion of my time and my attention,” she says. “I don’t know if it’s the same for other people, but certainly for me it is more emotional when working on a topic that intersects with my life. Working on something that has to be respected because this is my life and it affects me in a very day-to-day, impactful way. I think it’s a testament to the people that are able to do it that they are able to shoulder that emotional work.”

For those living with diabetes who have benefitted from her research and advocacy, there is much gratitude that despite that emotional toil, Witteman has continued to play an active and passionate role in fighting for research to better represent them.