Author: Linxi Mytkolli

By Bruce A. Perkins, MD, endocrinologist, and person living with T1D

Adapted by Krista Lamb

Living with type 1 diabetes can be complicated at times, and new technologies can add another layer of complexity. For some, new technology has meant better blood sugar control and improved quality of life. For others, well, it’s just another item on an already exhaustive list. Still others are achieving targets and self-managing fine without these systems, and they worry a new technology could throw off the delicate balance they’ve worked hard to achieve.

This is the reality as patients and healthcare providers try to determine if one of the latest technological advancements—a hybrid closed loop system—is the right fit.

A hybrid closed loop system automates basal insulin delivery throughout the day, still relying on the patient to deliver bolus insulin at meal times and correction doses for high blood sugars. For many, this system reduces the burden of managing blood sugar levels throughout the day. However, it requires an engaged and informed user who has been coached by their healthcare team in how to use the system safely and effectively.

In Canada, there is one approved technology (Medtronic 670G), some unapproved “do it yourself (DIY)” systems that use cell phone apps, and new systems are expected to be approved soon, following recent approvals in the U.S.

Is a hybrid closed loop system right for you? Below is some information, adapted from my recent paper in the Canadian Journal of Diabetes, to help you decide.

Maintaining the insulin pump and sensor functions require some work.

For a patient, this means changing and rotating the infusion sets regularly, managing the sensor and transmitter, calibrating with a glucose reading at least two to three times a day, and responding to the system when it requests additional information. For someone who is comfortable with the technology and with the level of awareness required, this may not be an issue, but you want to be certain you understand what needs to be done and how often before you start using the system.

It can be expensive.

The above-mentioned sensors and transmitters, as well as the hybrid closed loop system itself, involve a number of financial considerations. If you do not have an insurance plan or the ability to incorporate the cost of using a hybrid closed loop system into your budget, it is likely not the solution for you. Even a DIY version requires an investment in the initial technology (which can be challenging to find) and still requires the use of sensors. Starting with access to only a temporary supply of sensors is not advised.

You need to understand the goal blood sugar range – and it’s not necessarily what you think it should be.

Patients using a hybrid closed loop system like the Medtronic 670G may be surprised that their fasting blood sugars are as high as 6.7 mmol/L, for example. But this is the system’s intended target. Research shows that maintaining SG levels between 4-10mmol/L for at least 70% of the time will approximately equal an A1C of 7%.

Of course, the system won’t provide such a stable blood sugar level, but it aims to keep your blood sugars in target range of 4-10 mmol/L. If you think you can achieve better targets without intervention, then an open loop system is probably a better option for you.

You need to trust the system.

A hybrid closed loop system uses an algorithm to determine the user’s insulin needs. After two to six days of monitoring your glycemic patterns the Medtronic system can be used in auto mode. During this time, a micro bolus of insulin is delivered every five minutes and adjustments are made if the sensor glucose level drops below or rises above the set threshold. For the user of any system, there needs to be a certain amount of trust in the system. If you focus on management at meal times and let the algorithm make decisions the rest of the time, your outcomes will likely be better than if you try to override the system. Unless you receive an alert telling you to make an adjustment (for example a hypoglycemia alert), you should avoid adjusting your insulin between mealtimes. Forcing a correction bolus could lead to hypoglycemia.

You have to focus on accurate delivery of the food bolus.

Most hybrid closed loop systems are not completely automated—the patient still needs to deliver an accurate food bolus. So while the system does an excellent job of maintaining blood sugars in target when you’re not eating, it depends on accurate notification of meals. You still need to count carbohydrates, evaluate your carb ratio and, in many cases, bolus before starting a meal. In fact, it’s often the most important element of successfully working with a hybrid closed loop system. If you are able to take an accurate food bolus, the system adjusts to bring your levels into the target range by the next meal or bedtime. If the bolus is missed or the carb count is inaccurate, the sensor glucose level may rise dramatically and the algorithm will not be able to bring you back into range in such a short time. If carb counting is a struggle or you often find yourself out of range after meals, you will want to work closely with your healthcare team if you decide to try a closed loop system.

Your care team can help with the details.

You’ve decided to try a hybrid closed loop system. You can afford the costs, you’re comfortable with the technology and you are providing accurate information at meal times. You will still want to consult closely with your healthcare team.

In my practice, those on a closed loop system have reported issues with the “dawn phenomenon”, where glucose levels rise as you wake. Users may also need to adjust the amount of carbs used to treat a hypo or have a shorter active insulin time. These are all things where your endocrinologist or other members of your diabetes care team can provide support.

In the end, the best diabetes management system is the one that helps you maintain your optimum glucose control without creating unnecessary stress in your life. You need to consider honestly how much or how little technology makes sense for you. Your healthcare team can assist in making these decisions by outlining the pros and cons of your options.

Adapted from the paper “Talking Points for Helping your Type 1 Diabetes Patient Decide About Hybrid Closed Loop”, published in the Canadian Journal of Diabetes, October 2019, written by Bruce A. Perkins, MD, MPH, Nancy Cardinez, NP, CDE and Christine F. O

Over the last few months, Diabetes Action Canada held two Members Forum meetings – one in English and one in French. These events brought together the broader Diabetes Action Canada community to share their thoughts on our Network and learn from our broader community.

The feedback received was excellent and is helping the organization with planning for 2020 and beyond. Below, is an overview of some of the ideas that were shared.

Communication:

Community members voiced a number of suggestions about how to share our message—everything from moderated sessions to blogs and video chats. A few highlights:

• Patient Partners reminded our researchers of the need to provide opportunities for feedback on research underway—and to share that research in language that is understandable to everyone.
• There was a request for more bilingual content and for more opportunities for our French-speaking Patient Partners to apply their experiences to research programs.
• Members wanted to see stronger partnerships with our institutional partners’ communications teams to create more opportunities and awareness of our Network.
• A media outreach strategy was suggested, as well as a focus on covering our events “as they happen” instead of after the fact.

Knowledge Translation:

Sharing the robust findings of the Diabetes Action Canada Network was a key part of these discussions. This included engaging policy-makers in research activities to better engage government at all levels and expand our reach to target more at-risk communities in their language of choice.

Research Planning:

Research continues to be the cornerstone of the work Diabetes Action Canada does and our members had many thoughts on ways to amplify the findings and better integrate those living with diabetes and other health care providers into the process. There was discussion of how to involve all members of the diabetes care circle, including social workers, pharmacists, diabetes educators, nurses and dietitians. Other suggestions involved including basic scientists in the network, giving Patient Partners an opportunity to share ideas for new research projects before they are planned, and engaging Patient Partners with research happening in their region.

The Diabetes Action Canada team looks forward to more of these discussions and to finding ways to implement as many of these suggestions as possible.

In February, Diabetes Action Canada Patient Partner and Scientific Ambassador Lucie Vaillancourt attended the Joint annual meeting of SQLNM, the CMDO network and COLosSUS Congress in Magog-Orford, Quebec.

For Vaillancourt, who has lived with type 2 diabetes for more than ten years, the event touched on many interests she has about nutrition, physical activity and healthy lifestyle habits. A former research nurse, Vaillancourt was also able to understand many of the more complex topics presented, which was helpful in getting the most out of this event.

“I was impressed with the interest and informed passion of the speakers,” she says. “The professionals and the students demonstrate a general desire to improve and contribute to better health for the population. I also observed that several speakers had patient partner participation at heart in the creation of their projects and throughout the entire research process.”

Vaillancourt attended presentations about the Laval University PULSAR project, which is a collaborative research platform with an intervention component in the area of ​​sustainable health. This talk also included information about Nutri Québec, a social project on the lifestyle of Quebecers. This study asks participants to provide their dietary information for study in return for a dietary evaluation at the end of the project. Vaillancourt was very interested in this particular program and plans to enroll and ask family members to also take part.

Another presentation on the patient-oriented research strategy discussed the primary aim of “the patient first.” There are currently 11 support units for SPOR across Canada and one in Quebec. Being able to involve patients in a research process from the start of the protocol is the basis of their strategy. The presentation also included information on how the program is promoting safe treatment of diabetes in the elderly and how access to patient data through electronic medical records (EMR) is an asset for clinical practice

Vaillancourt also saw Diabetes Action Canada Co-Scientific Lead, Dr. Jean-Pierre Després speak about promoting cardiovascular health in the workplace. The talk included a lot of information about overall heart health in Canada, focusing on the idea that it is better to be in good shape than to lose weight, which was positively received.

For future events, Vaillancourt would like to see presentations by patient partners. “An experienced patient partner who has participated in the development of a research project with clinicians or researchers could talk about their experience and stimulate others to integrate patient partners into their teams,” she says, suggesting that a joint presentation with a researcher and patient partner would work well in this setting. In addition, she would have liked to see other health professionals, such as kinesiologists, psychologists, social workers and others who work in a clinical or research setting represented. Overall, she was very pleased with the event and all that she learned.

Read Vaillancourt’s full report on this event in English or French

The latest issue of the Canadian Journal of Ophthalmology features a paper by Dr. Valeria Rac and her team: Tele-retina screening of diabetic retinopathy among at-risk populations: an economic analysis.

The paper compares this Diabetes Action Canada program against other standard of care programs in rural and under-screened communities. Dr. Rac and her team found that tele-retina is a more cost-effective means of screening for diabetic retinopathy.

Read the paper online at the Canadian Journal of Ophthalmology now and learn more about the tele-retina screening program on our website.

For diabetes researchers across Canada, data from patients is a critical tool in determining what projects will truly make a difference for people living with the disease. Understanding how many people have diabetes, what type of diabetes they live with, and the number and types of complications they are experiencing enables health service researchers to design, implement and evaluate projects with real impact. The more detailed information available, the easier it is to hone in on specific health challenges that matter most to patients.

This is one of the core reasons Diabetes Action Canada developed the National Diabetes Repository (NDR). The NDR is a tool that researchers can use to better analyze information about people living with diabetes across Canada to improve health outcomes and prevent complications.

“Currently, we have valuable information available from across five provinces,” says Conrad Pow, a senior project manager for Diabetes Action Canada who oversees the NDR. “Our goal is to have researchers use this comprehensive information to better showcase the actual health issues that are being experienced by Canadians so that policy makers and governments can invest wisely in programs and research that will truly make a difference. We also want to identify the risk population that is in need of a preventative intervention to avoid the devastating complications associated with diabetes such as blindness, kidney failure and lower limb amputation.”

For example, using the NDR, an approved researcher could see that a woman with type 1 diabetes was diagnosed with kidney disease at age 54, then scan the database to find out how frequently women in their 50s with type 1 diabetes are diagnosed with this complication. They can also see the type of medication these women are on to prevent kidney disease and whether there are any other contributing factors, e.g., high blood pressure. This type of data can be extremely helpful to establishing better clinical practice and for advocating for re-direction of health care resources if a trend is identified.

All the information collected in the NDR is de-identified, which means there is nothing in the database, such as names, birth dates or health card numbers, that could potentially identify the patient. Approved researchers can access the information in a secure analytic environment that has been designed not only to meet, but to exceed the standards outlined in privacy legislation.

One unique feature of this project is that oversight of the use of the repository’s data is done through dedicated Patient Partners working alongside researchers, healthcare providers and experts in privacy and law. It is still uncommon for a research organization to incorporate patients into the governance of a project like this and, as highlighted in a recent article from Diabetes Action Canada in the April 2019 edition of the British Medical Journal, this collaborative approach has been extremely successful.

Pow believes the decision to have patients play an active role in this research program has paid enormous dividends. “Patients should be at the centre of all research and they should have a seat at the table when decisions are being made about what research projects have access to their data—even when that data is anonymous,” he says. “Patient partners have the ability to sit with researchers and discuss the value of the work. For example, if a researcher wants to look at the impact of insulin pumps and whether or not this treatment has led to reduced hospitalizations, a patient who is advocating for improved coverage for pumps in their province can see the potential impact that of the research findings.”

The NDR is also showing great potential as a tool for those working with artificial intelligence (AI). “There has been growing interest in the ability for AI researchers and mathematic modellers to create risk calculators or predictive models by running advanced analytics on the data in the repository,” says Pow.  Diabetes Action Canada co-hosted an AI workshop with the Fields Institute for Research in Mathematical Sciences in Toronto in the spring of 2019 that enabled that research community to see how the NDR could add value to their work. “We are moving towards a future where we can predict someone’s individual risk of developing a complication, which would be truly a game changer,” says Pow.

Access to the NDR is now open to researchers whose projects are approved by the Diabetes Action Canada committee overseeing this work.

Are you a researcher interested in using the National Diabetes Repository? Learn more and request access on the Diabetes Action Canada website.

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. We focus 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 provincial governments to plan, execute and evaluate these research projects so we can improve patient outcomes and experiences.

When Virtue Bajurny was diagnosed with type 1 diabetes a few months before her sixteenth birthday, she was the only young person in the diabetes program at the hospital in Etobicoke where she was treated. That meant taking her diabetes education classes amongst older adults and seniors, all of whom were living with type 2 diabetes. It was an experience that left an impression and laid the foundation for how she thinks about diabetes as a whole.

“They were all so nice to me. They were like, ‘Poor you, you’re so young and you have to deal with this,’” she says. “So, I never really understood that thing where you’re in this camp or this camp [Type 1 diabetes or Type 2 diabetes] because everyone was so supportive and nice, it didn’t really make sense to me.”

That feeling of wanting more diversity and support for all people with diabetes, regardless of type, was one of the elements that drew her to working with Diabetes Action Canada when researcher Dr. Holly Witteman invited her to participate as a Patient Partner.

“I like that there’s type 2 and type 1 and a variety of people’s experiences,” Bajurny says. “Sometimes it feel like there’s a little bit of type 1 vs type 2. If you meet people and talk to them, it breaks some of that down a little bit.”

Now a social worker and therapist who has experience helping people with diabetes manage their mental health, Bajurny also felt she brought an important voice to the organization. During her graduate work, she had looked at research on diabetes and online peer support and been shocked by the gaps she saw in terms of knowledge and understanding. “I just remember reading research where I felt like it was really obvious they didn’t talk to people or have an advisor or somebody that had diabetes on the research side of it,” she says.

She remembers being frustrated reading the reasons the researchers thought they were getting a result and thinking, “No, you’re wrong.” She was also put off by the language used that labeled participants as “diabetics” and not people with diabetes. “They just felt biased in a certain way or not fully informed, like they didn’t have the full picture,” she says. “It felt important to have someone with lived experience on board so they could fill in the full picture.”

As a member of the Patient Circle and the committee working on Sex and Gender related research, Bajurny has enjoyed the opportunity to meet others from a range of diabetes backgrounds and being able to add her lived experience as a person with type 1 diabetes, as well as her professional experience as a social worker to the research process.

For Witteman, a researcher who also lives with type 1 diabetes, Bajurny’s involvement made sense because of her work in the online diabetes community and her ability to offer thoughtful reflections on the work. She also knows the importance of the patient voice in research.

“As a researcher, I’ve always worked with people who belong to the community I am aiming to serve with my research. It’s just how you do things, because if you don’t involve people who will ultimately use the research, you risk going in the wrong direction or missing opportunities,” Witteman says. “As a person living with diabetes who also happens to be a scientist, I see missed opportunities in other diabetes research where, had the researchers partnered with patients, they would have saved themselves a lot of hassle.”

Moving forward, Bajurny is hopeful there will be opportunities to add her experience to projects on mental health and quality of life in diabetes. She has seen the investment made in supporting the mental health of those with cancer through her professional work and knows there is value in pursuing this in the diabetes field. As the Diabetes Action Canada work continues to grow and develop, she would like the chance to be part of expanding research in this area.

Would you like to become a Patient Partner? Learn how!

Meet our Patient Partners.

Written by: Krista Lamb