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I am, of course, concerned about privacy. In a world where pretty much everything there is to know about me is contained in a device I hold in my hand, I am well aware that there is a lot of data (diabetes and non-diabetes) available.
Obviously, I’m not all that concerned. I have my location settings switched on all the time. I check into places I visit – or rather, used to check into places because these days those check ins would be ‘bedroom’, ‘living room’, ‘kitchen’, ‘home office’, ‘garden; and not much else. I use social media extensively, at times offering a pretty intimate picture of my day-to-day activities. I happily installed the COVIDSafe App without a second though to what that would mean in terms of being able to trace where I had visited. I have done so much online shopping in the last few months that Amazon will have a very accurate and specific profile of my buying habits and what the inside of my house looks like. I happily sign up to new apps and websites, and pretty much every non-Murdoch news outlet has my details so I can access the latest in news. I do ridiculous, mindless quizzes on Facebook, signing up to have the privilege of finding out what my birthstone says about me.
But the thing about it is that I am happy to choose to hand over that info (and yes, I get that I have little idea which third party organisation is then given access to my data, but really, if they want to know ‘what 1970s song’ I am, they are welcome to that information). I also keep an eye on just who I have given access to, and frequently unauthorise apps and subscriptions.
Because I can do that.
I have the same attitude when it comes to my diabetes data. My personal situation is that I don’t share my data with anyone. I don’t have anyone real time monitoring my CGM. I don’t ever give access to my data to my HCP unless there is a specific issue I need help with and then sharing data is limited and on my terms. To be honest, I haven’t had anything downloaded for a HCP in the whole three years I’ve been Looping. And yet, the medical appointments I’ve had in that time have been the most rewarding, the most satisfying and the most relevant consultations I’ve ever had. I walk out with clear ideas about what I need to do to keep going with my diabetes, and feel so satisfied that the things that I wanted to discuss have been addressed.
I have recently done a couple of meetings where discussion has been around what is important when it comes to the development of an app or program. One meeting was referring specifically to an app that would be collecting data about day-to-day feelings of wellbeing, the other was about collecting data from a connected device. The meetings included a discussion about who would be able to see the data, and how they would be shared.
For me, the undeniable most important thing is being able to determine who sees my data, when they see it, how they see it and why they see it. I remember a few years ago, when Cellnovo was launching in Australia, attending a workshop where the inventor of the pump was showing off the fancy data collection app and how it was set up. I was a little astonished when we were told that the default setting for data sharing was up to the HCP. It was automatically turned on, and could be turned off, but that had to be done by the HCP. There were a couple of diabetes advocates in the room that night, and none of us seemed all that impressed about that.
When asked in these meetings what was important about the set up of these new data collection apps, the first thing I said was the PWD being in absolute control of who they share the data with. In my mind, that is a non-negotiable.
Last week, I was surprised to hear that some of the meeting participants say that it is a condition of access to diabetes devices that downloads by HCPs are compulsory. I asked for that to be clarified, thinking perhaps I’d misheard, but no, I had heard correctly the first time.
I have thought about this a lot over the last week. I thought about my ‘old days’ when I used to ‘forget’ to take in BG record books to avoid having to go over them with my HCP, or not have a meter with me in case I was asked for a download. This was, of course, before I realised that I didn’t need to agree to sharing the information on my device. It’s much harder in 2020 when we have our devices literally strapped to our bodies and driven by our phones to make the ‘I left it at home’ claim.
And I’ve also wondered how it is possible that in 2020, the agenda for a diabetes consultation is not being set by the PWD. It seems that data remains king to a lot of HCPs who have made the determination that access to data is not negotiable. I have been on advisory boards here in Australia and know that there is no way that this sort of thing would fly as national policy. Some centres may insist that data be downloaded, but PWD could still push back if they were comfortable doing so. (For the record, there should be no need to do that. Permission should be asked each and every time access to data is requested, and consent should be granted for it to happen. This also refers to the idea of having to be weighed at all appointments as matter of course.)
Obviously, in the true spirit of YDMV, there is no one way to do this and if people are happy to share their data, and for their HCP to have access to it, then brilliant! But that actually isn’t the point of today’s post. It’s not about deciding that you are okay with it. It is about not having a say. It’s about the idea that HCPs consider themselves the gatekeepers of MY data, or that they have a right to it. To me, I don’t think that is okay at all.
Postscript
This post is referring to adults, but if you want to read about my unpopular posts about kids consenting to sharing their data as they get older, try here or here.
This was one of the first things I saw when I opened my email this morning: the lead article in the latest edition of The Limbic – ‘Subsidised CGM has not improved outcomes in Australian children with T1D’.
I’m relying on the The Limbic’s commentary as the study is not open access (I have requested a copy from one of the authors), and according to the report, the focus of the study was improvements in A1C and reductions in severe hypoglycaemia.
It will come as no surprise to anyone who has read anything I have written about technology or heard me give one of my many, many talks on user experience that I found this report problematic. Screaming that a well-funded and hard-fought for program, providing much needed diabetes technology to children (and adults) is ‘underwhelming’ does not sit well with me at all, especially when the main way the program’s success has been evaluated is a highly flawed clinical measurement.
When I look at the benefits I list when it comes to using any sort of diabetes tech – or other diabetes management, whether that be a drug, an education program or even peer support – changes to my A1C is far down on the list. I understand that for some people, this is certainly a measure of success, but it is not even close to one of the first things I would consider.
My history of using diabetes technology is long and elaborate. Perhaps one of the best examples of just why A1C gives a very incomplete picture of how I measure success is my initial foray into using an insulin pump. It was almost 20 years ago, and I was only three years into living with diabetes. That story is one that could be used as an example of ‘How NOT to do pump therapy’.
I was educated (and I use that term very loosely) by a rep from the pump company. She talked at me for three hours, pressed buttons, loaded some numbers into the device and then stepped out so a dietitian could teach me all I needed to know about carb counting. She was in the room for forty-five minutes. (For context, this was my introduction to carb counting, because my first dietitian encounters were only about low GI, with a general direction of ‘Eat as much as you want of it as long as it is low GI’).
I was released from the hospital with this new device strapped to me, step by step instructions for how to do a cannula change in three days’ time, and absolutely no idea what I was doing.
But here’s what happened: I could sleep in again. I didn’t need to eat unless I really wanted to; eating by the clock became a thing of the past! I could eat brunch out with friends again, without having already had breakfast at 7am. I ate more of the foods I wanted to and stopped stressing out each time I sat down for a meal. I felt more relaxed. My life felt just a little bit more mine, rather than dictated to my a most unwelcome health condition. And sleep! Did I mention sleeping in?
My A1C was the highest it ever was. By all clinical measures, I was absolutely messing this up. But by my measures – which were based on how I was feeling, how emotionally robust I was, how burnt out I felt, how late I could sleep in on the weekend (I see a theme) – I was ticking every single box.
My endocrinologist told me that I was wasting my money (and his time) being on a pump, and nothing I could do to explain that for the first time in three years I felt like myself. Sure, I knew that I had work to do on my A1C, but I finally felt emotionally resilient enough to do that. He just shook his head and sent me on my way…and was promptly sacked.
(Luckily for me, the story ends well because about eight months later, I came across a woman called Cheryl Steele. Suddenly I could use a pump properly. My A1C came down; my quality of life remained elevated.)
My story is not uncommon. I have spoken with dozens and dozens of people who have benefited from the CGM initiate and overwhelmingly, the stories I hear are people who are grateful for the tech for what it has offered them. Interestingly, we rarely talk about those measures that HCPs and researchers seem to think are the best way to gauge the success of any sort of intervention. They talk about those same things I mentioned earlier. When the CGM initiative was first launched, parents of kids with diabetes told me they had slept for more than three hours at a time at night for the first time in years. They told me how they stopped fearing hypoglycaemia so much, because they were being alerted if their kids glucose levels were trending downwards. They told me that their kids were having sleepovers and heading off to school camp for the first time.
A1C? Maybe we would mention that somewhere down the track, but that wasn’t what got us the most excited. That wasn’t the bit we spoke about when we uttered the words ‘life changing’.
Obviously, research is important. Data is essential. It was data that provided the strong case for Diabetes Australia, JDRF, ADS, ADEA and APEG to advocate for CGM funding as part of the NDSS. But the case that was put forward also included research that looked at QoL, because the organisations know that this matters.
Research that focuses on A1C is always going to be problematic in a health condition that will never only be about that number. It’s problematic for a number of reasons – not just because it gets my shackles up before I’ve had my morning coffee. We know the pot of money that goes to supporting and funding initiatives, such as the one in this study, is very limited. Funding authorities don’t have the nuanced understanding of all the different interventions that need funding, so if a study like this comes across their desk, it could raise red flags.
I am not for a moment saying that this sort of research should not be conducted or that negative results should be buried. What I am saying is that any results need to be flagged as only ever presenting part of the issue as a whole.
I am looking forward to reading the whole study – and truly, I’m hoping that this blustering post is all a waste of time because somewhere in there, I will get to see that the researchers spent a fair bit of effort evaluation QoL as well. I’m hoping that the trumpeting heading from The Limbic is nothing more than their typical sensationalism.
My fear, however, is that there won’t be more, and that once again, PWD will have been reduced to nothing more than a flawed metric that shows only one corner of the picture of our lives with diabetes.
I’ll finish with one final thought. I advocate for PWD’s involvement in every single step of diabetes research (not just as participants of studies), and one of the reasons I do that is because when we are at the table when studies are being first mapped out, we are given the chance to remind those conducting the work that the answers they are seeking are coming from people. Real people who will always be far more than their diabetes. And somehow, that needs to be reflected in the study they are doing. It can be done. Unfortunately, this seems to have missed the mark.
At the best of times, I’ll celebrate any kind of anniversary, but it seemed even more important to acknowledge my ‘loopiversary’ this year in what can really only be termed as the most fucked of times. Last week, I clicked over three years of looping, a decision that remains the smartest and most sensible I have ever made when it comes to my own diabetes management.
In reflecting just how Loop has affected my diabetes over the last three years, I’ve learnt a few things and here are some of them:
- The words I wrote in this post not long after I’d started looping are still true today: ‘…this technology has revolutionised every aspect of my diabetes, from the way I sleep, eat and live. I finish [the year] far less burdened by diabetes than I was at the beginning of the year.’
- The #WeAreNotWaiting community is but one part of the DOC, but it has provided the way forward for a lot of PWD to be able to manage their diabetes in ways we never thought possible.
- Even before I began to Loop, the kindness and generosity of people in that community was clear. I took this photo of Dana and Melissa, two women I am now lucky to count amongst my dearest friends, at an event at ADA, just after they had given me a morale boosting pep talk, promising that not only could I build loop for myself, but they would be there to answer any questions I may have. I bet they’re sorry they made that offer!
- Loop’s benefits are far, far beyond just diabetes. Sure, my diabetes is easier to manage, and any clinical measurement will show how much ‘better’ I am doing , but the fact that diabetes intrudes so much less in my life is, for me, the real advantage of using it.
- That, and sleep!
- I get ridiculously excited when other people make the leap to looping! I have watched friends’ loops turn green for the very first time and have wanted to cry with joy because only now will they understand what I’ve been ranting about. And experience the same benefits I keep bleating on about.
- It’s not for everyone. (But then, no one said it was.)
- You get out what you put in. The more effort and time and analysis you put into any aspect of diabetes will yield results. But with Loop, even minimal effort (I call the way I do loop ‘Loop lite’) means far better diabetes management than I could ever achieve without it.
- It took an out of the box solution to do, and excel at, what every piece of commercial diabetes tech promises to do on the box – and almost always falls short.
- It’s amazing how quickly I adapted to walking around all the time with another but of diabetes tech. My trusty pink RL has just been added to the phone/pump/keys/ wallet (and, of course, mask) checklist that runs through my head before I leave the house.
- Travelling with an external pancreas (even one with extra bits) is no big deal.
- I was by no means an early adopter of DIY tech, but I was way ahead pretty much any HCPs (except, of course, those living with diabetes). The first talk I gave about Loop still scars me. But it is pleasing to see that HCPs are becoming much more aware and accepting of the tech, and willing to support PWD who make the choice to use it.
- The lack of understanding about just what this tech does is astonishing. I surprised to still see people claiming that it is dangerous because users are ‘hacking’ devices. Language matters and you bet that this sort of terminology makes us sound like cowboys rather than having been thoughtful and considered before going down the DIY path.
- The lengths detractors (usually HCPs and industry) will go to when trying to discredit DIYAPS shouldn’t, but does, surprise me. The repeated claims that it is not safe and that people using the tech (for themselves or their kids) are being reckless still get my shackles up.
- Perhaps worst of all are those that claim to be on the side of those using tech, but under the guise of playing ‘devil’s advocate’ do more damage than those who outwardly refuse to support the use of the technology.
- The irony of being considered deliberately non-compliant when my diabetes is the most compliant it ever has been hurts my pea-sized brain. regularly.
- There is data out there showing the benefits and safety of looping. Hours and hours and hours of it.
- My privilege is on show each and every single time I look at the Loop app on my phone. I am aware every day that the benefits of this sort of technology are not available to most people and that is simply not good enough.
- Despite all the positives, diabetes is still there. And that means that diabetes burnout is still real. But now, I feel guilty when feeling burnt out because honestly, what do I have to complain about?
But perhaps the most startling thing I learnt on this: The most variable – and dangerous – aspect of my diabetes management has always been … me! Loop takes away a lot of what I need to do – and a lot of the mistakes I could, and frequently did, make. Loop for me is safer and so, so much smarter and better at diabetes than I could ever hope to be. I suspect that as better commercial hybrid closed loop systems come onto the market, those who have been wary to try a DIY solution will understand why some people chose to not wait.
And finally, perfect numbers are never going to happen with diabetes. But that’s not the goal, really is it? For me, it’s about diabetes demanding and being given as little physical and emotional time and space in my life. With Loop, sure numbers are better – but not perfect – and I do a lot less to make them that way. It took a system that did more for me, keeps me in range for most of my day, and has reduced the daily impact of diabetes in my life to truly understand that numbers don’t matter.
Spend enough time trawling through social media posts with a #DOC somewhere in the hashtag, and it is inevitable that you will see photos of people’s CGM graphs. Often, it’s PWD getting excited at their flat line graphs because they have managed to stay within range for a certain period of time. Or perhaps it’s to show shock and utter disbelief at loop systems doing all the work. It can be because we won’t to show how we have managed to nail the timing and amount of a bolus, and that usually-difficult to manage food nemesis (hello, rice!), completely avoiding a spike. Or, it could be just because we feel like sharing.
I don’t share my graphs a heap these days, but have in the past. It’s a personal decision as to whether we want to share their data online, and if you do, knock yourself out. Your data, your rules! I understand why some feel that it can be considered not especially helpful for others, setting us up to feel we are failing if we compare. But the conversation sharing can generate is really useful for a lot of people.
Every now and then, a non-PWD will share their libre or CGM trace to show that even those with a perfectly working pancreases are subject to glucose fluctuations. This is done with the intention of support and encouragement and to show that flat lines really are unrealistic. While I’m sure that those sharing glucose graphs of people without diabetes is never done with any malice – in fact, completely the opposite – I believe it is nonetheless problematic, and misses the point.
I get it. It’s a noble goal to try to make PWD feel less negative when we are unable to manage a perfectly flat line at 4.0mmol/l for hours on end. And to also understand that’s not how the body actually works, even when everything is doing what it should be doing.
But it is totally redundant. And downright annoying. And also, completely inconsiderate.
I live with diabetes and am fixated on trying to limit the variation of my glucose levels because I have to. PWD are told that keeping those numbers between 4mmol/l and 8 mmol/l is the goal. And we’re told that when we go outside of those numbers – especially when we go beyond the upper limit, all manner of nasty things will happen to us. That’s what was told to me the day I was diagnosed with diabetes, and repeatedly what I have seen since.
Showing me your graph that just happens without any effort on your part is not reassuring. It’s pointless. And somewhat heartless. When your level goes up to 12 because you ate a family block of chocolate, it comes back in-range fairly quickly. And not because you had to do any fancy-pants calculations, or micro (or rage) boluses.
When I eat a block of chocolate, whatever happens next is pretty much 100% due to my efforts. I have done some fancy pants calculations. I have had to bolus – maybe once, most likely a number of times – to get my glucose level back in range. And then I sit there and hope that I haven’t over bolused…
Oh – and when you show me that your glucose levels dipped into the low range or sat there for a while, it doesn’t reassure me or make me feel ‘normal’. Because the difference is that when that happens to me, I am doing all I can to make sure that I am okay, that I don’t pass out, that I don’t overtreat (again!), and that I am safe. And then I get to recover from a hypo hangover – something you are fortunate to never experience.
To be honest, I actually find it completely ironic when it is HCPs sharing their data to make me feel better, and a little thoughtless because the reason that I am in constant pursuit of these straight, tightly-in range lines is because it is HCPs that told me in the first place that is where I must stay to ‘prevent’ all.the.nasty.things.
And finally, when this happens, it centres people without diabetes in a conversation that should very much have the spotlight firmly shone on us. Your glucose level data, and the patterns they make are not like ours. They do not represent the blood, sweat and tears, the emotional turmoil, the frustration, the fear that that is somehow reflected in our data.
Perhaps rather than sharing non-PWD data, instead acknowledge just how difficult it is to do diabetes, and commend people with diabetes for showing up, day after day, to do the best we can – regardless the shape of our CGM graph.
A real-life PWD CGM graph. Mine, from about 10 minutes ago.
Sometimes it feels as though discussions in the diabetes are seasonal. Like clockwork, we see the same conversations happen at the same times. Without missing a beat, almost as soon as a scientific conference is over, someone will comment about how difficult it is for PWD to get to conferences (true, however this year, #dedoc° voices could have assisted a number of the people who were stating that), and then there are discussions about disclosure by PWD who are fortunate to attend, even though pretty much every advocate I know who attends these sorts of things does a stellar job of disclosing.
And of course, the nature of the first big meeting of the year, ATTD, means that there inevitably will be noise about the gap in technology access. And you bet this is a discussion that we need to be having on regular rotation.
After attending my first ATTD, I wrote a piece about the complete and utter dichotomy of being at a conference that was only talking about the latest and greatest in technology while, at the same time, whilst the community was in the midst of its usual Spare a Rose month of fundraising. I struggled to balance the idea that we were talking about automated insulin delivery at the same time as urging donations so people could just get insulin!
Today, I’m revisiting the piece I wrote after last year’s ATTD, where my worlds of diabetes technology and language matters merged, and combined this with the over-representation of those at the super-dooper-tech-y end of the diabetes technology spectrum. (‘Super-dooper-tech-y’ is, obviously, a very technical term.)
I don’t for a moment think that meetings with a strong tech focus should end, or that those who are innovators in technologies should take a seat and let others speak. I don’t believe that at all. I will be forever grateful to the pioneers who continue to push the envelope and make things better for people with diabetes. But I do think that we need to ensure that there is equal attention to those who – by choice or because of their circumstances – are not walking around with an algorithm driving their diabetes.
If we truly believe that all diabetes stories matter, then we need to hear from people doing diabetes in every way possible. Perhaps if we make more of an effort to find and hear those stories, we will stop minimising our experiences, and starr seeing that whatever we are managing to do is truly enough…
DISCLOSURE 1 (for ATTD 2020)
I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference.
We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.
In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.
And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘I just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.
I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)
At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.
The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.
Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!
There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.
And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.
It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.
Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them. We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.
Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.
So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.
I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I mean…I use Loop. It works for me. Perfectly.’
We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.
DISLCOSURE 2 (for ATTD 2019)
I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.
These days, I usually don’t show my glucose data online. When I first started Looping (about two and a half years ago), I regularly posted the flat CGM lines that amazed and surprised me. I also shared the not-flat lines that showed how hard my Loop app was working as temp basal rates changed almost every five minutes. The technology worked hard so I didn’t need to, and the results were astonishing to me. I shared them with disbelief. (And gratitude.)
I stopped doing that for a number of reasons. It did get boring, and I definitely recognise my privilege when I say that. I also acknowledge my privilege at being able to access the devices required for the technology to work. And there was the consideration that sharing these sorts of stats and data online inevitably lead to comparisons and competition. That was never my intention, but I certainly didn’t want to add to someone having a crappy diabetes day while I blabbed about how easy my day had been.
But today, I’m sharing this:
This was my previous 30-day time in range data from the Dexcom Clarity app on the day I arrived back home in Australia after returning from New York. (My range is set to 3.9mmol/l – 8.1mmol/l.) I’m not sharing it to show off or to boast. I don’t want congratulations or high fives. In fact, if anyone was to see this and pat me on the back, I would respond with the words: ‘I had very little do with it’.
I can’t really take credit for these numbers and would feel a fraud if anyone thought I worked hard to make this happen. Using an automated insulin delivery system full time means that I do so much less diabetes than ever before while yielding time-in-range data that I could once only dream of.
I want to share it, not to focus on the numbers (because it’s NEVER about the numbers!), but to explain what happens when diabetes tools get better and better, and what that means in reality to me.
Those thirty days included the following: End of year break up parties for work and other projects (four of those); ‘We-must-catch-up-before-the-end-of-the-year’ drinks with friends (dozens of those!); actual Xmas family celebrations (three of those over a day and a half– and I’m from an Italian family, so just think of the quantities of food consumed there). Oh, and then there were the three weeks away in NY with my family. Our holiday consisted of long-haul flights from Australia, frightful jet lag (there and back), a lot of food and drink indulgences, out-of-whack schedules, late nights, gallons of coffee, no routine, and more doughnuts than I should admit to consuming.
Add to that some diabetes bloopers of epic proportion that had the potential to completely and utterly railroad any best laid plans: insulin going bad, blocked infusion sets, sensors not lasting the distance, a Dex transmitter disaster.
And yet, despite all of that, my diabetes remained firmly in the background, chugging away, bothering me very little, with the end result being time in range of over eighty per cent.
This graph is only part of the story of why I so appreciate the technology that allowed me to have a carefree and relaxed month. Diabetes intruded so little into our holiday. I bolused from my iPhone or Apple watch, so diabetes devices were rarely even seen. Alarms were few and far between and easily silenced. I was rugged up in the NY cold, so no one even commented on the Dex on my upper arm. The few times I went low, a slug of juice or a few fruit pastilles were all it took, rather than needing to sit out for minutes or hours. Diabetes didn’t make me feel tired or overwhelmed, and my family didn’t need to adapt and adjust to accommodate it.
That time-in-range graph may be the physical evidence that can point to just how my diabetes behaved, but there is a lot more to it, namely, the lack of diabetes I needed to do!
As I spoke about this with Aaron, he reminded me of my well-worn comments about not waiting around for a diabetes cure. ‘You’ve always said that although you would love a cure, it’s the idea that diabetes is easier to manage that excites you. Ten years ago, when you spoke about what that looked like, you used to talk about diabetes intruding less and being less of a burden to your day. That is what you have now. And it is incredible.’
In a couple of weeks, the diabetes conference juggernaut will descend on Madrid for ATTD.
This one is all about new treatments and technologies in the world of diabetes and, in its thirteenth year, looks to once again be a busy and enlightening meeting.
There is so much on the program that focuses on user-led technologies and initiatives. I think it’s fair to say that PWD have long recognised that technology in diabetes is more than just the devices we wear on our bodies. We have long used technology for support and to connect to others who help us manage the day-to-day life of diabetes, and to learn and share. DIYAPS may be about the systems, but grasping the role of online platforms and support is essential in understanding the #WeAreNotWaiting movement as a whole.
It’s great that a number of PWD already know that they will be part of ATTD this year, attending satellite events run by different device and drug companies. Some are on the program and some will be there through other opportunities and work.
The more the merrier, I say! Different voices with different experiences sharing and learning is always a great thing. And having the opportunity to meet people in real life after only seeing them online adds another dimension to our peer support networks.
For European diabetes friends yet to secure a place at ATTD, there is another possible avenue in, but you need to be quick. Launching at ATTD is the new #dedoc° voices program. Although #dedoc°has its foundations in Germany it is truly an international community, involving people from all over the world. #docday° events (always a highlight at these conferences) involve diabetes advocates from across Europe and the US, and even the odd Australian, too. It’s great to see this new initiative is helping more advocates get a seat at the diabetes conference table as active participants.
APPLY NOW
If you want to be considered for the #dedoc° voices program, you need apply, which is super simple – just go here, where you will find out all about the program and how to throw your name in the ring! Applications close on Friday, so chop chop!
Successful applicants will have their travel and accommodation costs reimbursed, and will receive full registration to the conference.
Good luck. And hope you see you there.
Disclosure
I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.
I am an invited speaker at ATTD 2020. Lilly Diabetes is covering my travel and part of my accommodation so I can participate in the DOCLab advisory group meeting held during ATTD.
Busan is a very different city today than it was last week. There won’t be warmly dressed people hurrying into BEXCO with IDF2019 lanyards around their necks, eager to learn about diabetes. The word ‘diabetes’ won’t be uttered in almost every language of the globe. There won’t be Melbourne diabetes people loudly lamenting that Starbucks seems to be the coffee of choice in the city.
And you won’t see groups of people from all around the world standing together talking about what it’s like to live with diabetes. Most of us have gone home to our respective corners of the world, back to our families, back to our jobs, back to our real lives. But we will always have Busan and the incredible week of the IDF Congress.
By the time I arrived in Busan on Monday, the IDF was already a different beast. There was a new President and Board in place and some of the concerns that we’d had about the handover had melted away to nothing. This paved the way for what we really there for: a week of learning, networking, hearing different perspectives and truly uniting for diabetes.
We did that.
Was it a perfect conference? Of course not; they never are. There were hiccoughs and AV fun. There were controversies that played out online very differently to the way they actually happened in real life. There were sessions – critically important and brilliant sessions from all streams– with disappointing turnouts.
But these are all minor concerns that are the reality of every conference I have ever attended. There will be a time for post-mortems and evaluations and planning for improvements to future conferences. That time, however, is not now. Now is the time to celebrate.
IDF 2019 was a brilliant showcase of diabetes from around the globe. As expected, I only attended sessions from the Living with Diabetes stream and every single story was beautifully presented, and enhanced by the professional expertise of the HCPs who shared the stage. Amongst the incredible tales were moments of discomfort. It’s challenging to hear of the struggles many of my sisters and brothers with diabetes face in their day to day lives. I was forced to confront my privilege in a way that demands more than just acknowledging it there.
Also, difficult to accept is realising that sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like. For every HCP who ‘gets us’ and understands the value of lived experience in the healthcare space dialogue, there are many others who just don’t accept it, and, despairingly, don’t want to listen.
But more on that another day. Because for now, I’m focused on the people who did such a stellar job. So here are just some of them!
Two hours after touching down in Busan, and we kicked off the sixth Ascensia Social Media Summit with these gems.
Bright and early on day 1 of IDF2019, and the auditorium was packed to hear about diabetes and tech.
Always, ALWAYS, pleased to share the stage with Jane. Here we are just before the panel session.
Georgie excited to TALK ABOUT HYPOS! (We couldn’t understand why there was an explanation mark at the end of that sentence.)
Manny Hernandez gave the LWD Stream Award Lecture and there is no one more qualified to talk about the importance of diabetes community. How honoured I was to introduce him!
Celebrating Manny! (Photo courtesy of Boudewijn Bertsch)
From Melbourne to Busan. Neighbours at IDF2019. Jo was speaking about living with a rare type of diabetes and Andy was there for support (and photos from rooftops).
This woman! Sana, deputy lead of the LWD Stream and a bright, fierce force.
Anita eloquently explaining the challenges of living with diabetes-related complications in Indonesia.
Apoorva highlighting #LanguageMatters in her talk.
Some of the most dynamic young people I have ever met at the Young Leaders in Diabetes Training Summit.
Cherise can always be relied upon to ask thoughtful questions.
I’ve lost count of the cities we’ve done our #DiabetesOnTour this year, but these blokes have made all my travel so much better! Thanks Bastian and Grumps.
My favourite people at IDF2019? The two baristas running this uber-hipster coffee van.
We were all surprised to see the room packed full at 8.30am on the last day of the Congress. Sex sells. Or people just want to talk about it…
One of the best pieces of advice I was ever give was this: surround yourself with smart women. This is the LWD stream from IDF2019. I truly was surrounded by the smartest of women! Thank you Sana, Pei Yan and Elizabeth.
The final session in the LWD and my highlight of the whole congress was my neighbour, Sol, talking about living with MODY 3. We could not have scripted a closing remark better than his: ‘Being at this conference has made me feel part of something and with people that understand.’ Welcome to the world of diabetes peer support, Sol. You are so, so very welcome here.
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
Two years ago, I walked off the stage at the inaugural ADATS event feeling very shaken. I’m an experienced speaker, and regularly have presented topics that make the audience feel a little uncomfortable. I challenge the status quo and ask people to not accept the idea that something must be right just because ‘that’s how it’s always been done’. Pushing the envelope is something that I am more than happy to do.
But after that very brief talk I gave back in 2017, a mere three months after I started Looping, I swore I would never speak in front of a healthcare professional audience again.
That lasted all of about two months.
In hindsight, I was more than a little naïve at how my enthusiasm about user-led technologies would be received. I can still remember the look of outright horror on the face of one endo when I cheerfully confirmed:‘Yes! Any PWD can access the open source information about how to build their very own system. And isn’t that brilliant?!
Fast forward to last Friday, and what a different two years makes! The level of discomfort was far less, partly because more than just a couple of people in the room knew about DIYAPS. In the intervening years, there have been more talks, interviews and articles about this tech, and I suspect that a number of HCPs now have actually met real-life-walking-talking loopers. Plus, Diabetes Australia launched a position statement over a year ago, which I know has helped shape discussions between HCPs and PWDs.
I’ve gotten smarter too. I have rejigged the words I use, because apparently, #LanguageMatters (who knew?!), and the word ‘hack’ scares the shit out of people, so I don’t use it anymore. (Plus, it’s not really accurate.) And, to protect myself, I’ve added a disclaimer at the beginning of my talk – a slide to reinforce the sentiment that I always express when giving a talk about my own life with diabetes, accentuating that I am speaking about my own personal experiences only and that I don’t in any way, shape or form recommend this for anyone else. (And neither does my employer!)
I framed my talk this time – which had the fabulously alliterative title ‘Benefits, Barriers and Burdens of Diabetes Tech’ by explaining how I had wanted to provide more than just my own perspective of the ‘three B’s’. I am but one voice, so I’d crowd sourced on SoMe for some ideas to accompany my own. Here’s just some of the responses.
(Click to enlarge)And this:
One of the recurring themes was people’s frustrations at having to wade through the options, keep up with the tech and customise (as much as possible) systems to work. And that is different for all of us. One person’s burden is another person’s benefit. For every person who reported information overload, another celebrated the data.
What’s just right for me is not going to be just right for the next person with diabetes. So, I used this slide:
I felt that the story of Goldilocks and the Three Bears was actually a really great analogy for diabetes tech. Unfortunately, my locks are anything but golden, so I needed a little (basic and pathetic) Photoshop help with that.
In this fairy tale, Goldilocks is presented with things that are meant to help her: porridge for her hunger, a seat to relieve her aching legs and then a bed to rest her head after her busy day. But she has to work through options, dealing with things that are not what she wants, until she finds the one that is just right.
Welcome to diabetes technology.
On top of working out what is just right for us, we have to contend with promises on the box that are rarely what is delivered to us. Hence, this slide:
Apart from the Dex add circled in red, all the other offerings are ‘perfect’ numbers, smack bang in the middle of that 4-8 target that we are urged to stay between. These perfect numbers, obviously belonging to perfect PWD with their perfect BGLs, were always completely alien to me.
A selection of my own glucose levels showed my reality.
I explained that in my search for finding what was ‘just right’, I had to actually look outside the box. In fact, for me to get those numbers promised on the box, I had to build something that didn’t come in one. (Hashtag: irony)
Welcome to Loop! And my next slide.
And that brings us back to two years ago and the first time I spoke about my Looping experience in front of healthcare professionals. It was after that talk, during a debrief with some of my favourite people, that this term was coined:
Funny thing is, that I am now actually the very definition of a ‘compliant’ PWD. I attend all my medical visits; I have an in-range A1c with hardly any hypos; I am not burnt out. And I have adopted a Goldilocks approach in the way I do diabetes: not too much (lest I be called obsessive) and not too little (lest I be called disengaged), but just right.
It turns out that for me to meet all those expectations placed on us by guidelines and our HCPs, I had to do it by moving right away from the things there meant to help us. The best thing I ever did was start Loop. And I will continue to wear my deliberate non-compliance as a badge of honour and explain how it is absolutely just right for me!
One of the many highlights for me at last week’s EASD meeting was the satellite event about DIYAPS. It was a Hacking Health event, co-organised by the OPEN Project consortium and promised to highlight the perspective of the #WeAreNotWaiting movement through the eyes of people with diabetes, researchers and clinicians.
It was standing room only, with the event having sold out a few days earlier. I was a little late (I had to present at an event involving early researchers and PWD) so unfortunately missed the always brilliant Dana Lewis kick off the event.
If you ever need someone to warm up an audience and set the scene about the DIYAPS movement, Dana is your person! I have seen her present a number of times now, and always pity anyone who shares the stage with her. Her presentations are always enthusiastic, articulate and engaging, and leave the audience wanting more.
I followed her talk on Twitter as I was in the cab from the EASD conference centre to the Centre Cívic Sagrada Família (bonus of offsite events is actually seeing some of the tourist attractions the city has to offer!) and could see that the audience was enchanted and galvanised with her talk.
The program was packed – and provided a balanced view of not only people using the tech (because honestly, sometimes it can sound like we have all drunk the Kool-Aid!), but also about DIYAPS in clinical practice, and research settings, as well as a session on medical ethics.
There were many stand out moments for me, but perhaps the one that stands out the most was from paediatric endo, and fellow Looper, Katarina Braune where she was able to distil DIYAPS into this single sentence (as tweeted by another Looper, Andrea Limbourg):
Perfect, perfect summary of looping!
We also heard from Roman Hovorka who presented on the experience of developing the Cambridge closed loop system (CamAPS). Anyone who has been following artificial pancreas technologies and research would know of Roman. I’ve heard him speak a number of times at conferences around the world and have always been grateful for his passion and dedication to advancing technologies to benefit people living with diabetes. So, it was a little surprising that I found his talk a little challenging.
One of the things that I have always admired about the DIYAPS movement is that there is a strong sense that our chosen DIY path sits neatly alongside commercial systems and regulatory bodies. While we may not choose or want to use a commercial system (and, of course, are not waiting for them), that doesn’t mean that there is disdain or derision of other options. In fact, there is admiration and gratitude for industry working to provide this technology to a broader audience. We know that not everyone wants to build their own system, and many ARE happy to wait for a system that will be in warranty, and comes straight out of a box, rather than cobbled together.
I say this knowing that same courtesy is not always afforded to the DIY world from industry, and I can point to every single time someone from a company developing a commercial automated system claims their systems are safe – implying that those of us in the #WeAreNotWaiting world are all cowboys not concerned with safety.
I would so have loved to have heard Roman really highlight all that his system has to offer, and what sets it apart from DIY systems, and how it is one more choice that will be available to PWD, rather than put down the DIY movement. I am all – ALL – about choice and love the idea that with this choice comes a better chance for us to find the tech that works best for our personal circumstances.
We don’t need to be defensive about ‘the other’ in diabetes technology. We need to acknowledge that there is no one right, perfect choice. DIY is certainly one of those choices, and as we heard sprinkled throughout the day, has been life changing for many people. But it is not the only option out there, and few people in the DIYAPS world would even suggest that it is. I guess perhaps that is what challenged me about Roman’s talk – he did seem to throw DIYAPS under the bus a little when it would have been far better to suggest it was just another bus route people may like to take.
So how could this event have been better? Well, I wish it had been part of the official EASD program. There is a lot of opportunity for HCPs to learn from the user-led tech community, and this extends to technologies and treatment options beyond DIYAPS. Reinforcing what is an overarching fact of life with diabetes – that all diabetes is DIY – is important for all working in diabetes to remember.
While DIYAPS technology may be at a far spectrum of the whole DIY diabetes idea, having HCPs and researchers listen to just how diabetes impacts on daily life, and the decisions we need to make is critical in their approach working with us.
Panel session to finish the day.
DISCLOSURES
My airfare and part of my accommodation to attend EASD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place all of Monday. Another night’s accommodation was covered by Novo Nordisk as I attended their advocate meeting on Digital Health Technologies.
I am part of the OPEN Project Consortium. I did not receive payment for my involvement in the Hacking Health event.
While my travel and some of my accommodation costs have been covered, my words remain all my own and I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. As ever, profanities are also all mine.
