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My email autoreply is on and I have a glorious four weeks of holidays to look forward to. The last time I took any time off was back in January when my family travelled to NYC. There is no travelling this year. We have a new, beautifully landscaped back garden to camp out in over the next month instead. (By ‘camp out’ I mean sit comfortably on a sun lounger and drink Pimm’s.)
My plans are simple – do as little as possible. I’ve rallied against taking any time off this year because I’ve not seen the point. Why would I take time off to simply stay within the walls that I’ve stayed within for most of the year?
That was a mistake. I should have taken some time off. I should have stepped away from the computer and from work – even if it were just for a couple of days.
And so, I’m going to truly try to log off, to not stare at my computer, or open my laptop to just write a quick thing, revise something I’ve been working on, message a friend. I’m going to remove SoMe apps from my phone so that it’s not all that simple to quickly check for an update of what is going on in the Twitterverse or the world of Facebook and Instagram.
I wanted to finish the year on a positive by highlighting some of the people who have made the DOC truly remarkable. So, this is a little Interweb Jumble of the folks in the DOC who have made the place safe, happy and continue to truly be about community. Check them out if you already don’t. Expanding your view of the DOC is important if you want to learn about more than just your part of the world.
Cherise Shockley has a new podcast…
…and you should subscribe! It’s called ‘Don’t Keep it to Yourself’ and it’s my favourite new diabetes podcast which is completely not about diabetes! Instead, Cherise is pushing people outside their comfort zones and asking them to share things that others may not know about them. I’ve loved hearing the episodes she’s already shared and had an absolute ball chatting with her.
The thing about Cherise is that she IS community. Even though her podcast is not about diabetes, it is still about people supporting and looking out for each other. Because that is who this woman is! Subscribe and listen from wherever you subscribe and listen to podcasts.
DOC friends who have made me uncomfortable – but in a good way.
First up is wonderful Steffi from Pep Me Up whose Instagram stories challenged me to look at what was going on in the world in different ways. She has been absolutely relentless in her efforts to elevate the stories of people who are forgotten or left behind and highlight the bias we inherently have. You can find Steffi on Instagram here.
And secondly, the also wonderful Tine who you can find on Twitter at @SayTine. We’ve known each other for a number of years now and we bonded over a mutual love of food. We have been allies in the language matters movement. Tine’s feminism has always been aligned with my own, but she has introduced me to different people and ideas that have made me consider some of my own ideas.
Accessible Dtech information…
…from the always enthusiastic and excited Nerdabetic. I met Kamil for the first time a year or so ago and discovered that he is every bit as awesome and lovely in real life as he is online. I love the way he makes the latest in diabetes tech accessible and relevant to tech-imbeciles like me while also making it relevant to people whose interest in and understanding of technology generally makes my brain synapsis short circuit. It’s great to see Kamil appearing in the global DOC more with appearances on diaTribe. Kamil’s YouTube channel is here.
Brilliant photography…
…from a DOC stalwart. Mike Durbin was one of the first people I noticed in the DOC when I started participating in DSMA tweetchats over ten years ago. I’ve never met him, but am always interested in what he has to say, and his thoughtful takes on the diabetes world. Mike appears in every single presentation I give about diabetes peer support and the DOC because I always share this picture. It speaks community to me.
On top of being such an integral and wonderful part of the DOC, Mike is a truly outstanding photographer and this year, I have found myself absolutely obsessed with what he has shared. You can see his work on Twitter here.
More Clever creatives
I adore the gorgeous artwork Nicole Buchanan shares on her Instagram. She absolutely nails diabetes moments with stunning designs and clever captions. I’ve shared so many of her posts because it’s like she has climbed into my head and then perfectly explained the mess in there with a beautiful illustration. You can follow her on Instagram here.
Another favourite diabetes creative is Katie Lamb, another talented illustrator who manages to capture diabetes in her lush drawings. She’ll even draw you for a small fee! Find her here.
Aussie Jenna Cantamessa continues to share beautiful drawings on her Instagram here, and she has just opened an Etsy store so you can own one of her beautiful pictures.
Special mention to dedoc for keeping PWD at conferences…
…because it would have been all too easy for us to have been forgotten with conferences going online. Bastian has done a stellar job getting DEDOC Voices up and running, offering scholarships to PWD to be part of ATTD (the only IRL large-scale conference this year), EASD and ISPAD.
CWD keeping people connected
Children with Diabetes did a herculean job of not only running hugely successful Friends for Life conferences online, but also churned out relevant content all year, and seemed to run a bazillion meetups to keep people connected. In case you missed the fireside chat hosted by Kerri Sparling about #LanguageMatters, you can play catch up here.
Spare a Rose…
…will be back next year, but I just wanted to mention the amazing efforts of the community this year as we smashed all previous records and delivered a magnificent USD$73,748 straight to Life for a Child. How remarkable is it when the DOC stops looking inwards??
The offline DOC friends who kept me going…
…are the reason that I have reached this stage of this year with some sense of balance. A huge thank you to the squad of four friends from the US & UK who have shared their lives with me throughout this clusterfuck of a year in an endless message thread that has kept me going. And the IRL friends too – with special mentions to Georgie and Jo. I am so grateful we live close to each other.
And don’t forget…
…please do consider making a donation to Insulin for Life’s Secret Santa Campaign.
Finally…
…that’s all from me for 2020. I’ll be back in the new year, but for now I am switching off and doing everything in my power to be less busy, less online and less engaged. Probably the only downside I see with Loop is how reliant it is on being close to my iPhone at all times, because honestly, I would like to let my phone battery run flat and not charge it up again until the end of January! But I am making a concerted effort to turn off and ignore notifications and be more present with the people I am so, so lucky to spend my life with. To those celebrating, have a wonderful festive season. Thanks to everyone who has stopped by. See you in 2021.
I know…it’s almost Christmas. And if you are anything like me and mine, you’ve left the run of gift buying a little late. Or you’ve wound up in lockdown. Or the thought of battling crowds is not something that you are all that keen on because there are too many un-masked bandits in the shops.
And so, here’s another little reminder that there is no need to panic because Insulin for Life is doing Secret Santa and your can absolutely buy the BEST. PRESENT. EVER. with heaps of time to spare. All without hitting pause on your Netflix binge!
It only takes $5/€5/£5 to make a real difference to a person with diabetes in an under-resourced country. That small amount will provide a week’s worth of insulin and diabetes supplies to someone who otherwise might not have them.
My family made the decision this year that in lieu of gifts for my cousins’ kids, we’d make donations instead. We absolutely adore these kids, but know that they probably won’t miss the book or book voucher we usually give them. And we also know that making a donation in their names literally means saving a life. That seems like a pretty good trade.
Without a doubt, 2020 has been horrid for many, and those doing it toughest were already likely doing it tough even before a year-long pandemic. If you are in the position to make a donation to this cause, please do. If you can share the link to the donation page with friends, colleagues and loved ones, please do.
I know that the diabetes community comes together to support our own beautifully. We’ve seen it in a million different ways. I’m hoping that in the lead up to Christmas that support will look like people making donations to Insulin for Life…and encouraging others to do the same. Please do help if you can.
Last year, at the IDF Congress, after a full and busy day of talks and sessions, there was a night of fun with a group of diabetes mates at a Korean BBQ restaurant. As we sat around the fiery pit, we were talking about some tricky things with diabetes and what helps and what doesn’t when we’re having one of those days.
Wielding a pair of tongs and other cooking implements as I pretended to have superior BBQ skills (I don’t), I explained to the table my cup of tea theory, how it is exactly what I need on one of those crappy diabetes days, and how my husband has absolutely mastered it.
‘I don’t need anyone to help, or try to fix the situation – especially as often the situation cannot be fixed. I want someone to tell me that diabetes sucks and then bring me a cup of tea.’ Two of the men sitting opposite me had a complete and utter Venus/Mars look on their faces. ‘A cup of tea? What’s that going to do?’
‘It’s not meant to ‘do’ anything,’ I said, flipping over some steak, and trying to not burn myself or others sitting near me. ‘Because he can’t ‘do’ anything about my diabetes being there or what is pissing me off. It just makes me feel less stressed out.’
‘Okay – well, if I ever see you on the side of the highway with a flat tyre on your car, I won’t stop and help. I’ll make sure to drive on past, find a café and come back with a cup of tea for you,’ one of them said with a cheeky smile.
‘That would be lovely,’ I told them. ‘By the time you got back, I’d have changed the tyre over and be ready to drive off, so tea would be great. Bring some wipes too to clean my hands. BUT, that’s not what I am talking about anyway, and you know that!’
This isn’t about not wanting help and thinking I can do everything by myself. Or that I need to be some sort of superhero, (because there are no superheroes in diabetes). It’s that most of the time there is no way to make things better or actually fix things.
I hate to be gendered, but in my personal experiences, it is men around me that quickly jump in to offer suggestions and offer solutions. I understand why. My dad struggles with the idea that I’m doing things tough and doesn’t like to not be able to help. He doesn’t really believe that sometimes the act of just being there provides me with bucketloads of support and reassurance. When I was first diagnosed, Aaron wanted to stop or fix the crappy moments because he didn’t want me to have to experience them. While I always appreciated people wanting to ease the distress, frustration and annoyance of diabetes, I also knew that their ideas and suggestions were something that I’d either already tried, or thought of and knew wouldn’t work.
And sometimes, the truth about diabetes is that there is just no fixing the situation. Instead, it’s a matter of riding it out.
These days, when I’m going through those shitty diabetes moments (or hours, or days or weeks, or 2020s…), Aaron is likely to gently set down a freshly brewed cup of black tea and a biscuit, accompanied with a back rub and the proclamation ‘Diabetes sucks’. And for me, that is worth more than troubleshooting or trying to work out why diabetes is behaving particularly nastily right now.
I talk about this often to loved ones of people with diabetes. Obviously, this is my experience and what works for me, but it is also mixed with plenty of tales from friends who speak about how when low they don’t want someone asking them how they got that way, of if high why they forgot to bolus. They don’t want someone suggesting they call their diabetes HCP or try something different or eat a different diet. They would rather notdiscuss diabetes right then.
I know that burnout happens for those around diabetes as well as those of us living it. It’s different and it impacts people in distinctive ways. But I suspect that some of that burnout may come from the constant desire to make the crappy diabetes stuff stop or not happen in the first place, even though that is not really a likely outcome. Perhaps one way to address that loved one burnout is to step back for a moment and not try to swoop in and repair what has gone wrong, or what is upsetting us, but instead to let us know that you are there for us in whatever way we need. And sure, for some people that may be going through a checklist of what happened during the day and talking through, step by step, how to make it different next time.
But for me? It’s a cup of tea and a shared understanding of the complete and utter suckiness that often accompanies diabetes. It may not seem like much; it may not seem to solve anything, really. But it gives me time to breathe and not have to talk or think about diabetes, or feel as though I have done something wrong. A cup of tea. (And maybe don’t forget the Tim Tam…)
This post is dedicated to my friend Amin who I am missing terribly, even though he teased me mercilessly in that Korean BBQ restaurant about my cup of tea theory. But I do want to thank him for the many virtual cups of tea he has sent me this year when I’ve really needed one.
Diabetes Awareness Month has come to a close and with it the blue that has washed over my social media feeds will dim a little. I had a quiet month, spending most of my time following others rather than sharing my own content. It seems to have been representative of my year in diabetes advocacy, really.
I’ve been quiet. It wasn’t planned, but it has been deliberate. And it hasn’t gone unnoticed. I’ve started and stopped and started and stopped this post for a while to answer the messages from people who have so kindly asked if I am okay. Let’s see if this is the one that sticks…
Earlier this year, I wrote about having a panic attack while on a plane after landing back in Melbourne from ATTD in Madrid. You can sort of read about it here, although I was pretty vague about what actually happened saying little more than that I turned on my phone to a million Twitter notifications about a blog post that some people had assumed was written about me and then subsequent comments. I was surprised, horrified and more than a little confused.
This came hot on the heels of a couple of other tricky situations. There was the run in with the diabetes HCP who told me to tone down (after they completely misrepresented what I had written about). And then there was another HCP rallying troops to call me out (that caused me to lock my twitter for the first time ever at the end of last year).
Anyway…the culmination of all these things resulted in the realisation that this year was going to be a lot different for me. I was going to take a massive step back from much of the work I did that was public facing. I felt that I simply couldn’t take the scrutiny that was coming my way.
Even before the panic attack on the plane incident, I was feeling unsettled. I was unspeakably nervous about the presentation I had been invited to give at the conference in Madrid. This was a completely alien feeling to me. I have been speaking publicly for decades, and for twenty years, comfortably stood on stage playing the flute for anyone who would listen. Standing in front of an audience doesn’t make me nervous. It doesn’t make me sweaty and scared. And yet, here I was wondering whether I should not go to Madrid at all to stand up on that stage. But after some ridiculous bravado as seen in this post, I decided that I had to go.
As I sat on that plane, desperately trying to recover from the panic attack that was making it difficult for me to breathe and hiding my tears from the other passengers, I had a fleeting thought that I probably should have gone with my gut feeling and stayed home!
And so, I felt that there was only one thing I could do. Forget the whole stand up thing and instead step back. I wasn’t necessarily sure what that would look like. I couldn’t stop attending and being part of diabetes meetings and conferences because that is part of my job, but I could turn down speaking engagements or anything that put me in a position where I was sharing my personal, lived experience that others might find challenging, or at odds with their own. I needed to deal with the diabetes burnout that was so, so heavy and weighing me down.
COVID-19 certainly helped with that. As the world got turned upside down, a lot of the things that I was worried about simply didn’t happen. It became easier for me to limit my interactions with people and hide away a bit more.
The feelings of burnout and anxiety about being part of the community didn’t disappear, but they seemed less urgent.
And with that came the realisation that the burnout I was feeling because of diabetes actually was not because of my diabetes at all.
Diabetes burnout has always happened to me when those constant diabetes tasks became too overwhelming; when just the thought of opening up a meter bag, or checking my CGM trace was too much to even contemplate. Burnout meant that every single number became a measure of my value and worth. I’d lose all perspective and lose all confidence of my abilities to actually do what I needed to do.
The burnout I felt now was the effort of being a diabetes advocate IN the diabetes community. It was fearing that I was being seen in ways that actually were completely inaccurate – in fact at complete odds with everything I have ever stood for – and that led me to second guess everything I said, fearing that I would be misunderstood. It was feeling vulnerable and scared and exposed in the community that was meant to support me.
I received an email from someone in the DOC who has been around for many years, and I have known (on Twitter only) who told me that because I am confident in my communication, am comfortable challenging ideas different to mine and share opinions that not everyone agrees with it, I leave myself open to criticism. And that criticism and the dialogue that follows resulted in their corner of the diabetes community being less enjoyable to him and others. All while suggesting that, unlike he, who has never deliberately set out to disagree with anyone – I seem to revel in it.
Interesting take. I don’t seek to disagree with people. But if anyone is saying something that I believe is stigmatising to PWD or minimising our experiences, I will call it out. It’s been my MO for almost twenty years.
I never replied to the person who sent me that email. I cried about it for days, however, and have it filed away and occasionally return to the half-written response that I keep meaning to finish so I can hit send on my reply. I feel it’s quite impolite that I’ve not replied to someone who took the time to write to me… But, truthfully, I am too tired, and that so-called confidence has abandoned me.
Diabetogenic is the least active it’s been since I started it close to ten years ago. That’s not because I have nothing more to write – I still write every single day, I just squirrel things away now, too afraid to share them, sticking to safer topics – research call outs, fundraising initiatives, commenting on things that aren’t controversial or taboo topics.
I started this blog because it was the space for me connect with others – not only people who were walking the same diabetes path as me, but also those who were doing things very differently. Because often, they are the people I learn most from.
It became a place I could write about those issues that were tough – the mental health challenges of diabetes, the frustrations and desperation I felt about the health system, trying to navigate through health professionals who refused to acknowledge that PWD belong everywhere and anywhere diabetes is spoken about. And it was a place that my split-apart heart was able to open up and share the unspeakable sadness that I felt as fertility issues became part of my life. I am so grateful that I was able to do that and receive the support that I so desperately needed from people who understood how the impact of diabetes on those fragile, and so, so hard parts of life shattered me into a million broken pieces. Because it was those people who helped glue me back together.
Wanting and needing that support and connection hasn’t stopped. I still seek it. I’m just a little more cautious about how I go about it these days sticking with friends and others I feel safe with rather than the wider community that doesn’t feel safe. I know where to go to get what I need.
I don’t really know what to do with this blog anymore. Feeling unable to share a lot of what I want to say is alien to me. But for now, this doesn’t seem to be the place to do it. I guess I continue as I have been – hitting publish when I feel I can, and for the next month, anyone popping by will see a lot of pleas to donate to Insulin for Life.
And I guess that will have to be enough for now.
I’m loathe to talk Christmas while still in November. In fact, we have rules in our house that we do not even mention the word until after my daughter’s and my birthdays which both fall in the last week of the month.
However, the other day as I was doing some supermarket shopping, I heard the strains of Silent Night and noticed glittery decorations starting to adorn the streets. Honestly, this year is so all over the shop that I have no idea what month it really is, but if Woolies wants me to believe it’s the festive season, who am I to argue?
And so, let’s talk Christmas…specifically this:
We all know how tough this year has been. We all know that there is no corner of our globe that has not been touched some way by the COVID-19 pandemic. What we should all also know is that even though COVID-19 may be global, there are some people who have been disproportionately affected, and it is always the most vulnerable people in the most vulnerable places that find themselves in that situation. Contrary to the idea that COVID doesn’t discriminate, people already doing it tough are finding things even tougher.
Which, to me, means that for those of us who can, now is as good a time as ever to step up and support anyone finding themselves in that situation.
I’ve been trying to get rid of the tradition Secret Santa or Kris Kringle (or whatever you call it in your family or workplace) for years now, instead directing those funds to a charity that supports people with diabetes living in under-resourced countries . You can read my grinch-like posts about that here and here oh, and here, where I yell that NO ONE WANTS A BATH BOMB!! It’s true. NO.ONE.WANTS.A.BATH.BOMB.
BUT! People with diabetes want insulin, diabetes supplies and education, and by ‘want’ I obviously mean ‘need’. (NO.ONE.NEEDS.A.BATH.BOMB.)
Insulin for Life Global is a charity that helps people with diabetes in need of the things that I (try really hard not to) take for granted. I have spoken and written a lot about Life for a Child (LFAC), mostly in relation to the Spare a Rose campaign. Insulin for Life Global picks up where LFAC ages out. Because, diabetes is for life, not just until you’re 26 years old.
This year, Insulin for Life is launching its new #IFLSecretSanta campaign and is asking the diabetes community to please get on board. I’m totally on board with this Secret Santa campaign because it will be more than just a novelty gift that is likely to end up in landfill.
A donation of $5 (or €5 or £5) will provide a week’s worth of insulin and diabetes supplies to a person with diabetes in one of the countries supported by the charity.
I asked around, and it seems that most office Secret Santa gifts have a limit of $10. That’s two whole weeks of diabetes supplies (including insulin) to an adult with diabetes who might otherwise not have it. If your whole workplace gets on board (or family, or friendship group, or book club…) that suddenly starts to add up to a whole lot of weeks of diabetes supplies!
As with any campaign like this, it works best when people share to help raise awareness of just how easy it is to be a part of it. AS well as making a donation, it would be terrific if as many people in the DOC could share details of the #IFLSecretSanta drive and encourage friends and family to donate.
I promise that no one is going to miss not getting a bath bomb. But people with diabetes, unable to access or afford essential diabetes meds and supplies, will be grateful if the money for that bath bomb was redirected to the charity that helps them.
Okay, DOC, now’s the time to do our thing. We do this and we do this well. While there are lots of people in this community and we certainly do not all agree, or even all like each other, it’s campaigns like this that seem like a good time to put aside differences and come together. Let’s see just what we can do to help Insulin for Life and their first #IFLSecretSanta campaign.
Donate here. (It will take you straight to PayPal to donate, and your donation will go directly to Insulin for Life.)
Hashtag away on your preferred socials: #IFLSecretSanta
Every morning for the last few months, my husband has posted a Facebook update on Victoria’s COVID numbers, along with a cheery message of congrats and motivation for fellow Victorians, in particular Melburnians.
My beautiful city has emerged from a long winter, spent very much not only indoors, but also within a 5km confine of our homes. The lockdown that saw us absolutely smash our second wave of COVID-19 was tough, but clearly necessary to regain control of numbers that were starting to look very, very scary.
I struggled with a lot of what was going on during that time. I am so lucky that the cocoon in which I live felt safe and secure and happy, because there was a lot going on that was not like that.
I had to stop watching the daily pressers from our Premier, not because the numbers were too overwhelming, (although the days we peaked at 700 new cases a day were tough), but rather because the media’s approach to just how present the information became too difficult to watch.
I’d already been stressed with reporting of those of us deemed high risk. That sense that we were disposable and didn’t matter with the dismissive ‘It’s nothing unless you’re old and already sick’, was a recurring theme from the moment the pandemic started.
But now it was more than that. It was the relentless negativity that was being thrown at the Premier and the Chief Health Officer that became unbearable. I realised that once I could recognise the voices and knew the names of the Murdoch hacks that hijacked the daily updates with their attempted gotcha-questions, that those who were meant to be reporting the news had become the news. I’m sure that’s not what journalists are meant to do.
Our whole state was desperately trying to understand just what was going on and how safe or at risk we were, but the loudest corners of the media seemed more focused on trying to bait politicians into admitting that they are the devil.
The same went for the way that opposition politicians who instead of being voices of support for their constituents, hampered, undermined and outright sabotaged the public health efforts that were clearly working.
This constant stream of negativity was impacting my mental health more than any curfew, needing to wear a mask, or limit to being permitted out of the house.
I also had to turn away and stop engaging completely with COVIDIOTS and conspiracy theorists who were outdoing each other with their stupidity. I still am incredulous that ‘anti-maskers’ is a thing. Except I’m not, because most of them are also anti-vaxers, and I’m pretty sure there is a direct correlation between the two. And so, I started using the mute function deliberately. Words, phrases and people that fed my anxieties because of their fear mongering were suddenly silent, and amazingly, I saw how much better I started to feel.
What I realised is that it comes down to this: in times when things are difficult and overwhelming, the fuel that keeps us going is not anger and negativity.
I am an annoyingly positive person by nature. It drives people around me nuts sometimes as I try to find the upbeat spin to pretty much everything. It wasn’t always easy during our long lockdown, but I tried.
Those daily number updates from my husband were really not about the numbers – most mornings I’d fed him the stats because I was the one tuned to Twitter until the DHHS daily update. It was the way he was sharing the news. I turned to him one morning and said ‘You’re like a cheer squad for Victoria. It’s lovely!’ I wasn’t the only one. Many people commented on how they waited for his injection of sunshine to get their day started.
Luckily for Aaron, he wasn’t the only person I was relying on for that positivity. On days where worries about diabetes-ing during a pandemic were creeping into my mind, I turned to friends in the diabetes community – both IRL and online. But again, I got smarter about how I did that. I completely isolated myself from whole corners of the DOC – again using mute – and found that my new curated DOC provided a source of support, entertainment and decent information. It’s amazing how much nicer one’s feed is without the passive aggressiveness and sub-tweeting that is just so common. (And yes, that last sentence could be considered an example of said shitty behaviour!)
The message group of my squad of four diabetes friends in particular lightened the load considerably, and helped talk me down from ledges of feeling scared and overwhelmed, with a mixture of reassuring messages, updates from their parts of the world, goofy animal pictures, sweary-ness and general inappropriateness, and a level of understanding that helped me breathe freely again.
I wonder what I’ll remember in years to come when I think back to 2020. I don’t think it will be the crappy media and sabotaging politicians. I know it probably won’t be diabetes because apart from occasionally heightened anxiety about the intersection of diabetes and COVID-19, my diabetes was manageable.
I suspect it will be the people around me – both physically and virtually – who made this dark time a little brighter. It will be my tightknit bubble of family and friends. It will be those friends who sent ridiculous memes, and made me laugh. The friends who shared pics of what they were cooking or book recommendations or how they cleverly were keeping their kids entertained while distance learning was happening. It will be the people who reached out as soon as Melbourne went into lockdown to ask how we were coping.
And so, now as there is so much more light here in Melbourne (both literally and figuratively) I’m keeping all of this close. Who knows where this pandemic will take us, or if there is a third wave coming? But if there is, perhaps I’ll feel better prepared, and know what to do.
The OPEN Diabetes Project is currently running a survey to look at the impact of do-it-yourself artificial pancreas systems (DIYAPS) on the health and wellbeing of users. There are stories all over the DOC about how people with diabetes (and parents of kids with diabetes) have taken the leap to Loop. These stories provide wonderful anecdotal tales of just why and how this tech has helped people.
The idea behind this new survey from the OPEN Diabetes team is to continue to build evidence about the effectiveness of this technology as well as take a look into the future to see just what this tech could have in store.
And important part of this new study is that it is not only OPEN (see what I did there?) to people who are using DIYAPS. That means anyone with diabetes can participate.
This project is important on a number of levels. It was conceived by people with diabetes and a significant number of the people involved in the project team (and I am one of them) are living with diabetes. We very much live the day-to-day life of diabetes and that certainly does make a difference when thinking about research. Also critically important is the fact that the ACBRD has recently joined the OPEN Project consortium. Having a team of researchers exclusively looking at the behavioural impact of diabetes technology will offer insights that have not necessarily been previously considered in such a robust way.
All the information you need can be found by clicking on the image below – including who to speak with if you are looking for more information. Please share the link to the survey with any of your diabetes networks, healthcare professionals who can help pass on details and anyone else who may be able to help spread the word.
A reminder – this is open to everyone with diabetes – not just people using DIYAPS. (I’m stating that again because it may not be all that clear as you are reading through the material once you click through to the survey.) You do not need to be Looping or ever tried the technology. Anyone with any type of diabetes, or parents/carers of kids with diabetes can be involved.
DISCLSOURE
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.
Diabetogenic 