Author: Linxi Mytkolli

This article, 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.

Are you interested in supporting type 1 diabetes research in Canada? The Connect1d Canada Community Advisory Committee (CCAC) is looking for people from the diabetes community to be a part of the committee that supports our Connect1d Canada program.

The Private Member’s Bill put forward by Sonia Sidhu, MP, Brampton South, to establish a national framework on diabetes passed unanimously in Parliament yesterday. This is a major step forward in supporting the health of people with diabetes or at risk of type 2 diabetes across Canada.

You can read the bill here: https://parl.ca/DocumentViewer/en/43-2/bill/C-237/third-reading

Preamble: “Whereas one in four Canadians live with prediabetes or diabetes, a chronic disease that can result in life-threatening complications if not treated;

Whereas Canada, the birthplace of insulin — a hormone that has played a key role in the control of diabetes —, seeks to be a leader in promoting diabetes awareness;

Whereas diabetes awareness and education can help people identify early signs of diabetes and thus prevent or delay its onset;

Whereas federal and provincial coordination and information sharing is required to prevent and treat diabetes as well as to prevent health inequities among people suffering with this disease;

And whereas the Parliament of Canada recognizes the need to be proactive in the fight against diabetes, and the Government of Canada should develop and implement a national framework for diabetes.”

Our partners at Diabetes Canada have just announced their 2021 research competition. Learn more below.

Diabetes Canada’s 2021 research competition is now open for applicants! This year, Diabetes Canada will be awarding 15 End Diabetes:100 Awards. Each of the 15 awards commits a $100,000 operating grant annually for three years to support brilliant scientists and provide them with the freedom, autonomy, and resources to set them on the road to breakthrough discoveries.

The objective of the End Diabetes:100 Awards are:

• To support researchers in the discovery of the biomedical, clinical, health services and/or population health factors that lead to the onset and progression of all types of diabetes and related complications.
• To develop solutions aimed at the prevention, management, or cure for people living with diabetes.

There is a two-stage application and review process:

1. Applicants are invited to submit a letter of intent (LOI).
2. After panel review, selected applicants will be invited to submit a full application. Diabetes Canada intends to advance the top ranking LOIs to the application stage to ensure a funding success rate of 50%.

At this stage, we invite all interested applicants to complete and submit by email an LOI using Diabetes Canada’s letter of intent submission template. Please note all LOIs are due by June 20, 2021, 7:59 p.m. ET.

Please check the Diabetes Canada website and review the 2021 Research Competition Guide for full details on the award being offered and eligibility criteria, policies, and timelines for the 2021 competition: https://www.diabetes.ca/research/grants—awards/competition

We thank you for your interest in the Diabetes Canada research competition, and for the crucial role you play in the advancement of diabetes research. Diabetes Canada is committed to working together with talented researchers towards our common goal of creating a world free of the effects of diabetes.

On April 14, 2021 Diabetes Action Canada partnered with the Banting & Best Diabetes Centre and the University of Toronto’s Department of Medicine to host a celebration of the 100^th anniversary of the discovery of insulin.

This event was designed entirely by a team of people living with or caring for someone with diabetes, and was an opportunity to share stories of how insulin has changed lives for the better. Each speaker was chosen because they were living with diabetes or doing work that was making a difference in the field.

More than 1,000 people registered for this virtual event, which was attended by those from around the world. They watched video presentations from people living with diabetes who shared their stories—including our youngest Patient Partner, 7-year-old Chloe Pow and her father, Conrad.

Mother daughter duo Dana and Marley Greenberg discussed their experiences living with type 1 diabetes and how the condition has changed in the almost 50 years since Dana’s diagnosis—and in the more than ten years since Marley’s.

The Diabetes Action Canada Indigenous Patient Circle was represented by Sasha Delorme and her family. Sasha told the story of her son Brayson’s diagnosis with type 1 diabetes and her own diagnosis with type 2 diabetes. And Diabetes Action Canada Patient Partner Mike Alexander shared his experience as a survivor of the Sixties Scoop. He had developed depression and battled addiction before his diagnosis with type 2 diabetes and has now transformed his life to become a successful triathelete.

Drs. Bruce Perkins and Alice Cheng shared the latest developments in insulin treatments in a panel moderated by Dr. Sarah Linklater, the Chief Scientific Officer for JDRF Canada. And Drs. Holly Witteman, Joyce Dogba and Joseph Cafazzo shared the ways that people with diabetes are being integrated into every part of the research process—and how that is improving the results.

In a special presentation, Grant Maltman, the curator at Banting House National Historic Site of Canada, discussed the importance of place in the discovery of insulin before unveiling Canada Post’s new stamp commemorating the 100th anniversary.

Jen Hanson, the Executive Director of Connected in Motion, and Oria James, the co-founder of the University of Toronto’s College Diabetes Network, presented on living and thriving with type 1 diabetes—a talk filled with resources to help those with diabetes find community and connection.

Throughout the evening, videos were shared from across Canada and around the world. Researchers, health care providers, people living with diabetes and those caring for someone with diabetes all submitted messages to commemorate this anniversary and talk about what insulin means to them.

The entire event was truly a celebration—with the chat filled with questions and comments from an international audience who were touched and inspired by the presentations.

This celebration was made possible thanks to a generous donation from Sun Life.

Videos from the event are now available for viewing on the Diabetes Action Canada website.

Watch now!

With diabetic retinopathy currently a leading cause of blindness in working-age Canadians , the need to do more is clear. That’s why Diabetes Action Canada researchers Dr. Valeria Rac, lead for the Health Technology Assessment and Network Analytics program, and Dr. Michael Brent, lead for Diabetic Retinopathy Screening program, developed Project OPEN.

Vision loss from diabetic retinopathy is often preventable if it’s detected early, but in each of the provinces there is a significant gap in screening. In Ontario, for example, more than 450,000 people (40% of those with diabetes) had not had their eyes checked over a two-year period. According to ICES data, a large majority of those who have not received screening are from low income areas in large cities.

Project OPEN takes a population-based approach to this problem. They are using administrative health data to identify people living with diabetes who have not had an eye examination more than a year. Their goal is to identify and engage patients, improve access and awareness of screening and improve health outcomes. Patients are then directed to one of the participating community health centres to receive a screening. Funding for the project is being provided by Fighting Blindness Canada and a private donation.

“When we asked people living with diabetes what is the most important for them, it was actually eyesight. That’s where the discrepancy was between the patients and providers. Providers identified other priorities, but patients were very clear that the number one priority for them was that they have an opportunity to keep their vision,” says Rac. This helped her team understand what people with diabetes wanted and to create a program that would help to achieve it.

Project OPEN is a unique opportunity to use administrative data in a way that puts those living with diabetes at the forefront. It is, Rac explains, using data that already exists to improve clinical care. Data from ICES will be used to identify people who have not been screened. Then, using electronic medical records, individuals will be referred to the participating community health centres for an exam.

The program has a particular focus on underserved communities, such as new immigrants, asylum seekers and the uninsured, who may not realize that they are eligible to receive this service. Many, Rac explains, would not even show up in electronic medical records if it were not for the participation of the community health centres. These are often the only places vulnerable populations will seek treatment.

“I think at the root of this project is also enhancing overall awareness,” says Jim Bowen, program manager for the Health Technology Assessment and Network Analytics program within Diabetes Action Canada. “The fact that 40% of people had not been screened indicates that there’s a lack of awareness of the availability and the funding for this screening. In order to prevent blindness, we need to make sure people understand that they need to get their eyes checked on a regular basis.” Project OPEN helps increase this awareness and access.

Working with a Diabetes Action Canada Patient Partner, Debbie Sismore, who herself is blind due to diabetic retinopathy, was a huge help in developing the program. Both Debbie and her husband, Malcolm, were involved in the project from the initial conception in order to ensure input from those who are living with this particular complication. “Both Debbie and Malcolm, as an example, provided input on the interview guide that we will use to interview patients about their experience with the screening that is currently ongoing in different community health centers,” says Rac, explaining how the duo have helped to create resources that will work well not only for health care providers, but also for those living with diabetes.

The involvement of those with diabetes will continue to be a priority for the team, as they move into the next phase of this project. Rac is hoping to engage more people with diabetes from vulnerable populations to ensure the program continues to fit their needs.

Congratulations to our Aging, Community and Population Health team for the publication of their recent paper: Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program. The paper was published in the March 17, 2021 issue of the Journal of Multimorbidity and Comorbidity.

The research paper shares the five challenges the team, led by Dr. Maureen Markle-Reid, learned from working with older adult partners throughout the research process. These were:

1) actively finding patient partners who reflect the diversity of older adults with multimorbidity;

2) developing strong working relationships with patient partners;

3) providing education and support for both patient partners and researchers;

4) using flexible approaches for engaging patients, and;

5) securing adequate resources to enable meaningful engagement.

The hope is that this paper will provide guidance to researchers on how to have meaningfully engage with this vulnerable and understudied subgroup in the patient engagement literature.

Read the paper here.

*This article originally appeared on the BBDC website.

It has been 100 years since the discovery of insulin, a seminal event in medical history that has saved the lives of millions of people around the world. It is an exceptional reason to celebrate, which is why the Banting & Best Diabetes Centre, Diabetes Action Canada, and the University of Toronto Department of Medicine have developed an event that will share not only exciting developments in Canadian research but also the experiences of those living with or working within the field of diabetes.

One of the speakers at this event, Dr. Bruce Perkins, is both a diabetes researcher and a person living with type 1 diabetes. Perkins, who is the Director of the Leadership Sinai Diabetes Centre and a Professor at the University of Toronto, will be speaking about the latest advances in diabetes treatment. It is, however, the magnitude of the discovery of insulin, a drug that keeps him alive and healthy, that is most significant to him.

“As a scientist, and a person with diabetes, it is humbling to realize what an extraordinary thing this discovery was one hundred years ago, and that we’re so fortunate to be able to celebrate it in its fullest,” he says. “The history really motivates me. It was a simple discovery with so much impact.”

Perkins will be joined on the panel by Dr. Alice Cheng, an endocrinologist at Unity Health in Toronto who is a passionate advocate for the diabetes community. She too sees this event as much more than just an opportunity to discuss diabetes treatments. “It’s exciting to learn from the past, in terms of understanding the history of the discovery, and then learn about what’s happening now and what might happen in the future,” she says. “It is a celebration of the achievement, but also meant to further Inspire everyone to continue this work so things keep getting better. It’s a very proud moment.”

In addition to this panel, which will be moderated by Dr. Sarah Linklater, Chief Scientific Officer at JDRF Canada, people living with diabetes will be front and centre to share their stories. Members of Diabetes Action Canada’s Indigenous Patient Circle will discuss the role of insulin in their lives, Jen Hanson from Connected In Motion will share ways to live an active and healthy life with type 1 diabetes, researchers from across Canada will explain how people living with diabetes have begun playing an active and vital role in their studies, and messages of celebration from around the country will be shared throughout the event.

“When we started to explore how to celebrate this milestone, we knew that people living with diabetes needed to be at the heart of it,” says Dr. Gary Lewis, Director of the BBDC and Scientific Co-Lead for Diabetes Action Canada. “We are so thrilled to have an array of speakers who will be sharing their experiences in a way that will educate and inspire. Our greatest hope is that a cure will happen within the next 100 years, but for now we want to show our appreciation for this life-saving discovery.”

Join us on April 14, 2021 from 4:30 p.m. to 8:15 p.m. ET. The event is free, but registration is required.

The full agenda is available here.