MJM MedTalks
DIY Automated Insulin Delivery


Meryem K. Talbo, Kate Farnsworth, Ilana Halperin, Zekai Wu, Maha Lebbar, Renée-Claude Bider, Predrag Jovanovic, Masha (Maryia) Samuel, Katherine Lan, Neeti Jain, Khiran Arumugam, Dylan Langburt, Esther ShinHyun Kang, Susan Joanne Wang for the McGill Journal of Medicine1
Published online: September 6, 2023

1McGill University


McGill Journal of Medicine (MJM) MedTalks is a Podcast series where members of the medical and health science communities from McGill are interviewed on topics related to career, research, advocacy and more. In season 2, we are opening up the conversation to members of the academic community beyond McGill University. The aim of MedTalks is to open a space where experienced professionals and researchers can share information and advice for trainees in healthcare and medical sciences. In this episode, McGill doctoral candidate and MJM Editor and Podcast member, Meryem Talbo, interviews four guest-experts on the topic of do-it-yourself (DIY) automated insulin delivery (AID) systems for people living with type 1 diabetes, with the aim of demystifying this novel and promising technology. The panel includes Kate Farnsworth, a patient-advocate and founder of an online DIY AID community of over 30,000 people; Dr. Ilana Halpern, an endocrinologist at Sunnybrook Health Sciences Centre in Toronto, with over 10 years of experience in the field; Dr. Maha Lebbar, an endocrinologist/diabetologist and current M.Sc. candidate at the University of Montreal with special interests in new technologies for type 1 diabetes; and Dr. Zekai Wu, a physician and current postdoctoral fellow at the Institut de recherches cliniques de Montréal (IRCM) and McGill University, who introduced the DIY AID system into China and is currently working on new type 1 diabetes technologies. This conversation covers the development of DIY AID technologies, their availability and accessibility to people living with type 1 diabetes, as well as the legality and regulatory frameworks that underlie their use. The show notes include a glossary of terms, links to publications, images, and videos referenced in the episode, and a transcript of Meryem Talbo’s conversation with the guest panel.


Content overview

0:00 Introduction;

4:10 An overview of automated insulin delivery systems;

7:32 The benefits of AID;

10:42 Challenges of accessibility to AID;

12:31 DIY AID and how it differs from commercially available systems;

16:39 DIY AID safety;

20:28 The challenges of DYI AID implementation;

24:25 DIY AID in Canada;

25:12 Why the Diabetes Canada position statement on DIY AID is needed;

27:19 The legal and Ethical challenges of DIY AID for clinicians;

31:45 The accessibility barriers for DIY AID and how they can be addressed in the clinic;

35:30 The role of clinicians in supporting their patient’s use of DIY AID;

37:22 How to find information on DIY AID as a patient and what to keep in mind when seeking information;

38:44 Why people chose DIY AID, their goals and expectations;

41:05 Online resources for the general public, clinicians, and researchers;

43:06 Advice to Trainees interested in getting involved in DIY AID;

47:03 Outro.


Links and papers


0:08 Meryem Talbo (MT): Hi everyone, welcome to another episode of the McGill Journal of Medicine (MJM) MedTalk series. In this series, we interview clinicians, researchers, as well as members of the McGill Faculty of Medicine and Health Sciences on topics related to career research, advocacy, and more. In this second season we also welcome expert guests from across Canada to participate in our talks. The aim of our MedTalks is to open a space where field leaders can share information and advice for trainees in health care and medical sciences.

I'm Meryem Talbo, a PhD candidate at the School of Human Nutrition at McGill and Managing Editor at the McGill Journal of Medicine as well as a member of the Podcast Team.

Today, we are joined by 4 experts to discuss their impressions as researchers and clinicians on the topic of DIY automated insulin delivery, or “do it yourself” automated insulin delivery, and the surrounding ethical, clinical and regulatory implications. We will also discuss the recent position statement by Diabetes Canada. I am delighted to be joined today by our four guest experts, Kate Farnsworth, Dr. Ilana Halpern, Dr. Maha Lebbar and Dr. Zekai Wu. Before we delve further into our topic, I would like to invite our guests to tell us a little bit more about themselves and their work in making diabetes technologies accessible to those who need it.

01:38 Kate Farnsworth (KF): Hi, my name is Kate Farnsworth. My daughter, Sydney, was diagnosed with diabetes when she was eight, and ever since I've been heavily involved in the do-it-yourself AID space and the do-it-yourself technology space. So I'm really grateful to be here and share some of my experience and how we're advocating for these technologies to be available for other people too.

2:07 Ilana Halperin (IH): I’m Dr. Ilana Halperin, an Endocrinologist in Toronto. And I've been caring for people with type 1 diabetes for the last 10 years or so, and I really love to collaborate with people living with diabetes and work with them to have the ability to live the fullest lives with diabetes placing the smallest amount of burden on their lives. And that's what piqued my interest in diabetes technology and I'm excited that I've been able to lead Diabetes Canada position paper on the topic that will hopefully help more healthcare providers across the country feel comfortable supporting patients who choose to use DIY technologies.

2:40 Maha Lebbar (ML): Hello everyone, very excited to be part of this podcast. So my name is Maha Lebbar. I'm a Master of Science candidate. I'm graduating in nutrition at Université de Montréal. I am also an endocrinologist and diabetologist in France where I graduated late 2021 to begin this MSc in Montreal. My interest in new technologies for diabetes that can alleviate a bit of the burden that people living with diabetes experience on a daily, if not hourly basis. I have the privilege of conducting such research in Dr. Remi Rabasa’s lab at the Institute of Clinical Research of Montreal.

3:27 Zekai Wu (ZW): Hello everyone, bonjour. I'm Zekai Wu, a postdoc at IRCM and McGill University, working on new diabetes technologies including today's topic, the AID systems. And I'm also a certified physician in internal medicine in China. During my PhD, I introduced the do-it-yourself AID system, the DIY AID system, into China as the first physician and have taken care of dozens of people living with type 1 diabetes using a DIY AID. I also led several studies suggesting the effectiveness and safety of DIY AID.

4:09 MT: Thank you. And I really want to express my sincere gratitude for our guests who are here with us today and for the incredible work that you all do. And for those who are interested in learning more about the work of our guests, please check out the episode description for more information.

Now, over the past century or since the discovery of insulin as a treatment option in the early 1920s right here in Canada, there have been some remarkable advances in the field of diabetes management, from different types of insulin to different ways of administering that insulin, as well as different ways of monitoring glucose, we are now in an era where people have the option to use technologies such as insulin pump and continuous glucose monitors to assist them in managing their daily life with diabetes. And today we want to talk about a specific type of technology, which is the do-it-yourself automated insulin delivery. But to start, I would like to ask our guests to please summarize to us and to our audience what an automated insulin delivery system is.

5:10 ML: Basically, as you know, people living with type 1 diabetes absolutely need insulin because their body cannot produce enough of it, or doesn't produce it at all. This insulin can be delivered two ways, either by using insulin pens or by using pumps. The patient was completely responsible for the insulin dose they administer themselves up until recently with the availability of automated insulin delivery systems. Those systems rely on 3 components to work: an insulin pump, a continuous glucose monitoring device, and an algorithm. The algorithm analyzes the glucose data coming from the glucose monitor and controls accordingly the insulin infusion rate given by the pump. For example, if the glucose monitor signals hypoglycemia or predicts hypoglycemia happening in the next 30 minutes or so, the algorithm is going to ask the pump to lower the infusion rate or to stop it completely.

This avoids 3 things for the user, the occurrence of hypoglycemia which is not a very very pleasant state. Sometimes they need to take carbohydrates and the extra mental load that comes with dealing with hypoglycemia and its aftermath. Similarly, if the user wants to be in a certain glucose range, for example during the night, the algorithm can automatically adjust the infusion rate for that to happen. This automated process and interaction between the algorithm and the pump and the glucose monitor is referred to as “closed loop”. As you can see, this automation is a huge advancement in diabetes management. Something to remember though is that those devices are not fully automated, meaning that people with type 1 diabetes still need to manage their meal time bolus and still need to know a bit more, and a bit about how their diabetes behaves in terms of sensitivity to insulin, units of insulin to carbohydrates ratios for each meal, and knowing their meals compositions. That is why it is also called hybrid closed loop systems.

7:04 ZW: I would like to borrow the word that Dr. Lebbar has mentioned several times just now, the automation. I think personally I think the biggest difference is automation. If we think of taking care of diabetes as driving a car, the conventional therapies as you mentioned, the injections or the insulin pumps are like having a human driver while the AI systems are like self driving or pilot- or autopilot.

7:32 MT: I like that analogy. Thank you for sharing that, Dr. Wu. So to expand on the concept of automation offered by these systems, what are some specific benefits that come with using an automated insulin delivery system as opposed to other forms of insulin delivery like insulin pumps or multiple daily injections, for example?

7:54 IH: I think it's already been mentioned a number of times about mental load and I just, like, love to share a story from my clinical practice. Just recently I had a patient who I recommended DIY looping to her a few months back, DIY AID, and she came back and she said “it was a bit of an effort to set up, but now the mental load on a day-to-day basis when it comes to managing my diabetes has gone down so significantly”. So while you still need to really think about “am I going to eat carbohydrates”, “approximately how many carbohydrates am I going to eat”, and let the system know ahead of time, the in between meal piece where you might be running higher, running low because the estimation at the meal time was wasn't accurate is really taking care of by the system. And one of the biggest benefits that people talk about is overnight–is the ability to sleep through the night without being awoken by alerts or alarms, which still is a benefit as opposed to not being awoken at all, which was the real reality, as Kate can attest to for so many people and their caregivers living with diabetes before we had CGM, was the fear of overnight hypoglycemia, resulting in in a fatality. But now you don't have to respond to the alerts and alarms and adjust the insulin. The system does it for you and you can have a good night's sleep and wake up in range.

9:12 ZW: I agree with Dr. Halperin that both the benefits rely on-, reflect on both the glucose management and the quality of life, including sleep quality. I feel that when we think about the benefits we need to 1st understand the burden of managing diabetes and in fact it is said that there are more than 42 factors that may affect the glucose level for people living with type 1 diabetes. Including food, exercise, menstrual period, mood and weather and others that are really hard to predict and, and there are more than 300 decisions to make every day for people living with type 1 diabetes. So it's really challenging and there's a lot of burden. So that's why this automation can really play the role, as just mentioned, that with this AID we could expect better glucose management because which is already approved by numerous scientific findings, you know, because they calculate and adjust the glucose levels every five minutes–much more frequently than a human driver. And 24/7, so even when you're listening to the podcast right now it is taking care of the glucose levels and it also takes more factors into consideration and is always objective and calm.

10:42 MT: Taking into account all of these benefits that automated insulin delivery provides to people living with type 1 diabetes that you mentioned, quality of life benefits also glycemic and diabetes management benefits, I guess the naive question to ask would be why isn't everyone on automated insulin delivery then?

11:02 ML: That is a very good question to ask. It showed a number of benefits for people living with the condition. It allows to safely achieve better glycemic management and to improve quality of life by lessening the mental load. However, and unfortunately, those technologies are not available for everyone and there is a number of explanations to this. First and unsurprisingly, there is the cost of those devices. The pump alone can cost from $4000-$8000. You also need to account for the glucose sensors that you need to change every 10 or 14 days, the catheters every three days, the cost of the insulin vial, not everyone can afford this. Especially in countries where healthcare coverage is not systematic for everyone. Second, there is availability issues. In some countries, those devices or some components of those devices are simply not available or commercialized. This raises the third point: the lengthy process of approving these devices. It can take several months or years. And finally, the indications. Even if the devices are available, the healthcare authorities, especially in countries where healthcare coverage is universal, only allow it to be prescribed in certain situations, such as recurrent concern in hypoglycemia or un-optimal diabetes management with current treatment.

12:31 MT: Thank you, Dr. Lebbar for shedding light on the availability versus accessibility issue and limitation and how that could actually occur and it's currently hindering a limiting accessibility to such devices and this is one of the reasons why some people choose to DIY their system. So can you please tell us how do people living with type 1 diabetes DIY or do themselves their automated insulin delivery systems and how are they different from commercially available ones?

12:59 ZW: Dr. Lebbar has introduced that an AID system consists of three main components and so you will still need to purchase a commercial instrument pump and a continuous glucose monitoring device. However, the control algorithm is really shared online, so you can follow the instructions written and shared by developers to connect these three components and build such a system. So the action may be more complicated than it sounds. Now, I just want to simplify it. But in fact the instructions are really practical and even if you encounter problems, you can always turn to the DIY AID community, which Kate is one of the main contributors to, and there are more than 10,000 users globally and I have also supported many people without IT background successfully using a DIY AID system. So personally, I think it's not challenging to DIY such a system and you've got a lot of support.

14:09 KF: So the DIY systems use, as have been discussed, some algorithms that were created by people living with diabetes for people living with diabetes. So they take a typically available commercial insulin pump and pair it with these algorithms in order to adjust insulin doses based on CGM readings. One of the features of the DIY systems is that they're able to iterate at a very quick pace because they're not restricted by some of the governing bodies like Health Canada or FDA. So people are consistently improving the systems based on user experience,

15:03 MT: Thank you so much, Kate. And actually it's a great segue for my next question. It's a quote that I saw during one of the presentations during a Diabetes Canada conference and it said that “it might be do it yourself, but you're not doing it alone” which I found quite telling and I was wondering if you can develop a little bit about what does that mean to you as part of this community?

15:25 KF: Yeah, absolutely. So as mentioned in the DIY space, the algorithms, applications, support and documentation have all been created by people living with diabetes and their caregivers for people living with diabetes. One of the greatest examples of this for me is the looped group which I built, which is a Facebook group for people interested in using this technology. It's now grown to over 30,000 people worldwide, so there's always somebody there and available. So the diabetes community has built this infrastructure to support folks living with diabetes to build these DIY systems and really provide ongoing 24 hour support with volunteers helping from all areas of the globe. So while we encourage people to build the system themselves, making it DIY, that doesn't mean that you're left on your own. Someone in the community is always available to hold your hand through the entire process.

16:39 MT: Yeah, wow, that's really amazing. And I must admit that as a supporter, yes, a patient centered and patient like care approaches the Open Access premise of DIY and that strong support system within the DIY diabetes community has always been fascinating to me. And I'm sure that there are some of our listeners out there, however, who might be a little bit curious to know more about the potential risks and safety concerns associated with DIY systems. So what can you tell us about DIY AID safety?

17:12 ZW: Well, yes, generally they're considered that they do not need regulatory approval. But actually recently FDA just approved one of the versions of the looping- of the loop DIY AID system which is a constrict version of it, so, so it is also undergoing some process and is now approved by FDA which can give us some confidence that it is also considered as safe and effective by regulatory bodies. But when you're asking are they safe? There is no definite answer, but I would say that they are safer compared with conventional therapies which are the treatment options that most people with type 1 diabetes are using. And if you use this DIY AID properly. Because living with diabetes and self managing insulin therapy inherently carries risk. Both under delivery or over delivery insulin could lead to hypo and hyperglycemia and also potentially substantial health consequences. So the current AID systems, including these DIY AID systems are developed for optimizing of safety and the algorithm prioritizes this avoidance of hypoglycemia. So it will just make sure that you don't have hypoglycemia and then it makes further step to avoid the hyperglycemia. This safety and effectiveness of AID systems also rely on accurate information. So that's why I am saying that you need to use them properly, then they should be safe. This information, including for example the reading of glucose levels, the amount of carbohydrate intake and different diabetes related parameters. The good thing is that numerous studies have already suggested that compared with conventional therapies, DIY AID reduced hypoglycemia, including severe hypoglycemia, which indicates that it is safer than conventional therapy. And the study from our group also, which includes AID users across Canada, also suggest that DIY AID are safe and comparably effective to commercial AID systems.

19:52 MT: Thank you Doctor Wu for those clarifications. But given these benefits that the DIY systems have in terms of, you know, the regular AID benefits on glycemic management and quality of life, but also that additional, you know, open access to the algorithms as well as that support in that online community that exists through Looped, for example, I was wondering why aren't DIY AID systems more mainstream or more commonly used by people living with type 1 diabetes?

20:28 ML: So the open source AIDs pose a number, a number of concerns, mostly from a legal standpoint. Those devices are unregulated, as we said earlier, less scientifically tested than their commercial equivalent. The components used, especially pumps, can be out of warranty, which poses questions of safety and technical failures. And the Technical Support needed in their initiation and in troubleshooting is provided by more experienced and tech savvy people either living with type 1 diabetes or even with someone that has it. And not by the company that built the pump, which is how it is usually done with people using commercial AIDs. Using open source AID also implies a great deal of involvement from people living with type 1 diabetes in dealing with their condition and involvement that not all people want to have or are ready to have. Another point that needs to be highlighted as well is the lack of acceptance from the healthcare professionals who will not necessarily support people that use those devices and therefore discourage people to use it, even if there is evidence supporting its safety, and efficiency.

21:34 IH: Completely agree with everything that Dr. Lebbar has said. And I think that we need to really emphasize the lack of comfort with, for most diabetes healthcare providers in this technology. And so in some of the research that we did for the upcoming Diabetes Canada position paper, we saw a lot of both qualitative and quantitative research that said that one of the barriers to accessing the technology was the lack of support from their healthcare team to use these technologies because of all of the issues that were just so well outlined by Maha. We have a situation whereby the patients don't feel supported by their healthcare team to use such technologies, and so, unless they are, you know, a little bit more adventurous and feeling that they can get the support they need from the external community, then they are less likely to pursue something like this. However, I'm really hopeful that our upcoming Diabetes Canada position paper will help more people feel comfortable supporting their patients to use these technologies. And it's not just my position paper, the evidence base is growing really nicely in diabetes, the ATTD meeting in Berlin just finished and there was a great symposium outlining all of the great work that's been done by Katarina Braune and The ‘OPEN’ Project that shows how much patient reported data has shown effectiveness and safety as Zekai already outlined. We have a recent randomized control trial published in the New England Journal of Medicine that shows as good, if not better, outcomes than what we would see with a commercial AID system. And so I think people are becoming increasingly comfortable that these are safe and effective technologies. And really diabetes is a do-it-yourself condition. So whether you're doing it yourself with traditional methods of insulin delivery or with automation and whether you choose to use commercial automation or open source automation, we should support our people living with diabetes to make choices that best meet their needs, but I think we still have a ways to go in getting more healthcare practitioners comfortable supporting their patients using these technologies.

23:45 MT: I absolutely agree with you Dr. Halperin, Dr. Lebbar as well. And as you probably know, the premise of this episode was really to talk about do-it-yourself automated insulin delivery to bring it a little bit closer and to demystify it to our future clinicians and our future healthcare professionals who are listening to us today and to all the trainees. And hopefully we will be able to, you know, relay that message and, as mentioned, demystify it for the benefit at the end of the day of the clinical practice.

So I was wondering if you can actually tell us a little bit more about the current state of the do-it-yourself automated insulin delivery in Canada.

24:25 IH: It's very difficult to get specific numbers, but I think if anybody has them it would be Kate, so I'm going to pass that over to her.

24:32 KF: I was just going to jump in there. I don't have accurate numbers, unfortunately. The difficulty is that we don't even know how many people live with type 1 diabetes in Canada. We can sort of give an assessment that there are many thousands of people seeking out information on these systems, but unfortunately there's no really great way to track. We know that there are hundreds of people using DIY technology in Canada based on their self-identification, but I'm sure that number is much larger in reality.

25:12 MT: I absolutely agree. And when I first started my training, I was also, I found it a little bit mind boggling that the lack of accurate numbers of, you know, how many people live with type 1 diabetes in Quebec or in Canada. But I am really hopeful and knowing that there are registries and you know, research teams out there that are taking time to try to actually find estimates and representation for Canadians living with type 1 diabetes, so to really know a little bit more about the experience of living with such chronic condition, I was actually wondering if we can bring back the Diabetes Canada position statement related to the use of DIY AID. And I was wondering if Dr. Halperin, you can tell us a little bit about the needs assessment for such, for such a position statement? Why is it needed and what should we expect from it?

26:07 IH: I mean the real goal was to raise awareness and also provide guidance. So the different jurisdictions around the world have provided different amounts of different types of guidance and some you know we know this can get outdated very quickly, but some jurisdictions like Australia and the US went so far as to put in writing in their practice guidelines that clinicians should not support patients using that. But this is changing rapidly and I think Zekai I already mentioned being part of the Lancet International Consensus paper that really details things in great detail, and so what we wanted to do is build on that paper in the Canadian context. I'd like to give a shout out to Amy Morrison, who did her entire masters thesis on this topic. And so she started us off with a great up-to-date literature review as well as some useful qualitative and quantitative data from the Canadian context. And what we know is that, certainly, healthcare providers were much more comfortable with commercial AID systems than they were with DIY, both in terms of exposure and just not really being sure how the systems work or how to make recommendations to help patients optimize their settings and also uncertainty about the legal and regulatory pieces.

27:19 MT: So if I understand that accurately, it seems like that hesitancy or this lack of comfort or uncertainty surrounding DIY AID systems isn't necessarily related to the clinicians doubt about their clinical benefits, but instead it might be actually due to legal or ethical concerns that clinicians might face if they were to recommend or support the use of these systems. So I was wondering if you can speak a little bit more about the potential or legal and ethical conundrums that clinicians might encounter, and if the position statement can answer some of these concerns.

27:58 IH: So in the position paper, we tried to address the legal, ethical, regulatory pieces head on. Recognizing we, we actually had a lawyer on our position paper who lives with type one, who did as much legal research as she could, but could never be 100% certain until an exact case like this comes before the courts. And one of the things that people worry about is, is this concept of negligence, like could they be found negligent because they supported a patient to use a technology that hasn't been approved by the regulators. But when she looks at that, when we look at sort of the legal test for negligence, and I won't get into the details here because I'm not a lawyer, but the bottom line really is, is that you're more likely to be negligent if you refuse to support your patient who's living with diabetes and chooses to use a specific type of insulin delivery than you are if you support a patient who's made an informed choice and you've documented that informed choice. And so in the position paper, we talk a lot about how to document that informed choice. We talk about the fact that the Canadian Association for Drugs and Health Technology (CADTH) has a whole approach to off-label prescribing. And while we're not exactly prescribing open source insulin delivery, we are supporting patients to use it and there's strong evidence of its safety and of its benefits. So we hope that more people will feel comfortable. And we have a table in the paper as well about CMPA or Canadian Medical Protective Agency recommendations, which is obviously more specific for physicians. But that's the first half of the paper and then the second-half of the paper that I'm really excited about is actually a user's guide. And so two papers are going to be published simultaneously in CJD and the user's guide is going to help to increase that confidence for people who maybe haven't worked with patients who've chosen to use these technologies, really get into a little bit more detail about how the algorithms work and how to help people optimize their settings. And a lot of that is building off of work that's already been done. There's been excellent AID consensus paper that came out this year that talks both about commercial and open source AID because how we approach diabetes management changes a lot; how much carbs you need to enter, how much carbs you need to take for a low glucose, how to adjust for variability factors. A lot of these things, exercise, et cetera, change when you're dealing with automation. And so we tried to make a really practical user’s guide and we're looking forward to doing some Diabetes Canada webinars to help disseminate this information as well.

30:22 MT: And we'll make sure to share all of those resources with our readers once they're available. I do have a little follow-up question actually, in terms of clinical practice. What would you say could be considered as the standard of care when it comes to discussing available options for diabetes management such as technology including DIY AID?

30:39 IH: What I think we can say is that, in general, when it comes to assessing somebody's practice and meeting standard of care, we think that the standard of care is that we should be offering patients all, letting them know about all available options. And certainly if you're going to talk about AID at this point, the evidence base is there that you should be talking about both commercial and open source AID. Some of the issues that were alluded to before, about having a patient who's on a pump that's off warranty, that's actually, I don't know, depending on which province you work in, that's actually a very common occurrence. In Ontario, the funding cycles are five years and the warranties are four years. So all our patients live with an out of warranty pump for at least a year. And so you know these are just some of the, some of the natures of dealing with diabetes technology. So I can't give direct legal advice as to say you could never get into trouble. But I think the chance that somebody could be found negligent or liable for a bad outcome would actually be more so if they refuse to provide care to a person living with diabetes than if they supported a person and who made an informed choice to avail themselves with this technology.

31:45 MT: I really just want to take a little moment to highlight and to acknowledge that piece of informed choice because I do believe that, as clinicians, we do have that mission in a way to sort of empower and support our patients to give them the information they need to make their own informed choice. I really like that we're moving away from that more top down approach and we're talking more about patient partnership and patient centered care, which I really hope you will be able to see in the future of, you know, the healthcare in the mainstream as well. My following question actually has to do more about the accessibility. So we are talking now about this position statement that is coming out from Diabetes Canada that hopefully will show, you know, brighter light in terms of all those implications for using DIY and hopefully clinicians as well as people living with type 1 diabetes will be more comfortable, you know, discussing it and maybe eventually using it if it, you know, if it fits their care plan. So my question is really about, what is- what are the accessibility barriers for people who want to use open source insulin delivery systems or do-it-yourself DIY AID and how can these barriers be addressed in the clinic?

33:00 KF: So the technology is available to everyone. There's still pump access questions across Canada, so that would definitely play a role in whether or not people can do this. There is a technology- a barrier for people. I don't want to present this like it's simple and everyone can do it. I wish that were the case. It does require some, you know, cognitive ability as well as some access to technology to be able to do this. We as a community have tried to make it as easy and as accessible as possible, but there are still barriers that exist for people who want to use these systems.

33:45 IH: And I'll just piggyback on what Kate was saying again. I was just watching some of the recordings from the ATTD and this was a similar theme. The algorithm is open source, but the ability to afford continuous glucose monitoring, a pump, supplies, even just your insulin, that's not universal across our country. And so there's some basic access issues that still have yet to be addressed even though the algorithm itself is free for anybody who can take the time and still even imagine if you can't access the internet, so you obviously need to be able to access the Internet, have a smartphone to download these applications onto and build the applications on. So there are some basic access issues that continue to be something that we need to keep in mind. The other thing I think we also need to keep in mind is that sometimes we assume that somebody can't do this work and there's a growing evidence base that right, someone might need help setting things up, but that you don't actually have to be an engineer to be able to use automated insulin delivery. And sometimes it's the people that are too used to micromanaging their diabetes that actually don't let the system do what it's supposed to do. They over interact with the system and they end up with more glucose variability and less optimal outcomes than the person who gets some help to get set up on the system and then lets the system do what it's supposed to do and we actually get better outcomes. So a lot of our access stuff related to pumps right now in Canada has a bit of a gatekeeping approach to it. You have to demonstrate your ability to count your carbohydrates and monitor your glucose regularly and attend enough education centers with the diabetes education team. And in some ways, those criteria need to be re-examined in the context of automation.

35:30 MT: And talking about automation, what do you feel about or what would you say to clinicians who might feel that there is a barrier for them to be able to support their, their, their patients who are using this technology? For example, they might be worried about “oh do I now need to know how to code, do I need to know how to set up algorithms?” What could you say to those clinicians to clarify this aspect?

35:55 IH: So we spent a lot of time on our position paper talking about this. There are certainly some centers in the country and some third party people who offer to build the apps for people. We don't recommend it because we think that because it is open source and changes are pushed out all the time, individuals who choose to use this technology should build it themselves. That doesn't mean they can't get a little bit of help from somebody who's a little bit more tech savvy, but they shouldn't just hand over their phone and then get an app and go on their merry way. They should be building it. Because it is not the role of a clinician to start becoming a computer coder and start building the apps for people. My job is to inform my patients about the availability of the technology. I often direct them to a couple reliable websites and Facebook groups, one of which Kate moderates, and suggest that if they're interested and they come back to me on the system, I will look at their Night Scout or Tidepool reports, and I will work with them to optimize their settings to get them the best glucose outcomes with the best quality of life. But I don't think that doctors and nurses should be in the business of building applications or doing any sort of coding.

37:01 KF: I just want to piggyback on that a little bit in that even the people who are building the systems for themselves do not need to understand coding or be an IT professional. There's very little, actually, interaction with the code whatsoever. So that's not a barrier for people living with diabetes either.

37:22 MT: Yeah. Thank you actually for adding that clarification. It goes really nicely with my next question. So I was actually wondering what are some steps that someone can take to inform themselves about DIY AID and what should they keep in mind when considering these automated insulin delivery systems?

37:42 ZW: The best step uh, maybe just to inform yourself first to get familiar with this DIY AID system, which I believe that you're already doing it by listening to this podcast. And another way is to join Kate looping Facebook group and you will find many useful materials to learn and a community to turn to. And after learning more about DIY AID, it's very important to set your goal and expectation. DIY AID or let's say all current AID systems are not perfect. And then discuss with your healthcare professionals team and the existing users in the community for advice. And if you are suspicious but still want to have a try then start with more conservative settings first. For example, setting a higher glucose target to optimize hypoglycemia prevention before pursuing a tight glycemic management.

38:44 MT: So Dr. Wu, you mentioned that it's very important to set your goal and expectations in terms of, you know, diabetes management or in terms of using or choosing different systems. So I was wondering if one of our guests can maybe summarize, why are people with type 1 diabetes choosing to use DIY AID? What are their goals, what are their expectations when they choose those systems?

39:09 KF: I can answer that. I ran a survey of people using these systems and what they let us know was the reasons they choose these systems. One was transparency. So they can see what the system is doing, what decisions are being made, what changes are being made, and they have the ability. It's not a black box. They can see what's happening. Interoperability was another reason that they choose these systems. Oftentimes, commercial systems are paired with a specific CGM, and the DIY systems allow for choice on sensor and pumps and algorithms and phones. So it really is a, you know, choose your own adventure. You can choose which ones work best for you. Safety. Many people felt that these systems were actually safer than commercially available systems. They could see how they had been developed. Everything is open source and available. Many people have been using these systems for the last 6-7 years, so they had some trust in the safety. Other for others, it was the only system that they could afford. They couldn't afford a new AID system. Which obviously would vary province to province and age. Unfortunately we do not have a universal pump infrastructure for the country. Some said it was the only automated insulin delivery system available where they're from. Now, I think that's evolved a little bit, but still some provinces I think don't have coverage for some devices. And then for others, they wanted a sense of community and they support open source software. So that was really interesting to hear as well.

41:05 MT: Thank you for sharing with us the results from the survey. I really like how the themes that came out all have to do with more transparency, more interoperability, more affordability and availability, and that the importance of the community really comes back to see. So thank you for creating a community like that for people who choose to be looped. I was wondering if you can share with us some of the online resources that people who are interested, for example, in learning more about DIY systems can go and consult and where can clinicians and researchers go to learn more about this technology as well?

41:48 KF: Well, I'm going to do some self-promotion. The looped group is not only made-up of people living with diabetes who are interested in this technology, but it is a welcoming space for researchers and clinicians, healthcare providers of all sorts. So that would be where I would send you. There are other spaces online that also can provide information if Facebook isn't your thing. Loop docs is the hub for all information about loop specifically, which I would say is the most popular DIY system in Canada this time. But there's also open APS and Android APS, and each of those systems have their own groups as well. Looped really tries to support everyone, but there are other other groups for different systems specifically as well.

42:46 MT: Thank you for that Kate. And just to our listeners, I just want to let you know that we will link all the references and resources and pages that Kate mentioned, as well as a little selected list from us and our guests, in the description of the episode. So make sure to check that out.

And before we wrap our episode, I just wanna ask our guests one final question. So we want to ask you what piece of advice do you have for trainees who are aspiring to work in this domain?

43:20 ZW: I just want to take this chance to encourage more people to get involved with this very, very important domain as there are still a lot of unknowns. You know, in most cases, healthcare professionals take the lead of treatment while people living with the condition are the recipient of medical advice. However, this is one of the rare cases that people living with the disease take the lead. This user driven movement will be the trend of future medicines.

43:51 ML: I completely agree with Zekai. Open Source AID is an excellent example of patient involvement and collaboration, and as a medical professional I'm really amazed by that. It is also a great way of stimulating the industry and improving their system as well. In my opinion, the healthcare professionals and industries need to get on board at least by supporting people using those devices and their choices. The piece of advice I would give to trainees, especially medical trainees, is first to trust their patients and their experiences. Don't listen to older generation healthcare professionals who often say it is the patient's fault that the treatment is not working. I was told that many times during my medical training but experience showed me that it's often not the case. Which brings me to the second advice: advocate for a more horizontal collaboration with your patients in order to improve their health. It is a collaboration. They learn from you, but you learn quite a lot from them as well.

44:50 IH: OK. I think it's my turn and I couldn't agree more with both Zekai and Maha. I think, you know, when I went through my endocrinology training, what inspired me and excited me about endocrinology was, you know, the feedback pathways, the pituitary axis and diabetes was just what you were going to do. And that has changed so much in the last 10 years. And I really love the ability to form longitudinal relationships with my patients and learn from them. And I share tidbits that I learned from my other patients with them and vice versa. And it's just a wonderful collaborative experience. And I know that that's still unfortunately not the norm for diabetes care across this country. But obviously the people who joined you today were all big supporters of patients driving their own care and driving their own experiences. And that's why you found us here. And I hope that we can inspire a whole generation of trainees to think about this and let diabetes be the model. You know, I don't think, and maybe I'm glucose centric, I often say or or endocrinology centric. I don't think there's a tougher disease where the person living with this condition has to be in the driver seat. Somebody said earlier they make 300 decisions an hour or something. I can't think of another condition. But still there's lots of chronic conditions that could benefit from a more patient centered and collaborative care model approach. And so hopefully this will inspire you to take that forward in whatever field to pursue.

46:15 KF: Yeah, I agree with everyone and everything that's been said already. I would say that people with lived experience live this every second of every day. So listen to them and trust them. Their experience is valid and important. The diabetes community has a huge wealth of information and really is on the cutting edge of disease management for diabetes. And I would add that we should be focusing on the cognitive and emotional burden that people with diabetes live with every day, and anything we can do to alleviate that and lift that burden should be the focus.

47:03 MT: Wow, thank you very much. Thank you so much for the amazing conversation that we had today, it was very informative. Thank you for clarifying and demystifying this technology and the DIY-sphere. And of course thank you very much for also continuing to advocate for patient centered care and for, as Dr. Lebbar stated; the horizontal approach in clinical care.

Wow. I absolutely agree with you Kate. Having or including the emotional burden in how we talk about diabetes is very important. And I really want to thank you today for this amazing conversation first of all, as well as for how informative it was. And I also want to thank you for clarifying and demystifying this technology and the whole DIY sphere. And of course thank you very much for also continuing to advocate for patient centered care. And for as, Dr. Lebbar stated the horizontal approach in clinical care.

And that's all the time we have today. Thank you for joining us on another episode of the McGill Journal of Medicine, the Med Talk series. This podcast was edited and produced by MJM’s podcast team members with input from our guests. Feel free to reach out to us on Twitter or Instagram @mcgilljmed or by e-mail. We would love to have your feedback and don't forget to join us again for our next episode.

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