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The ATTD conference is, by its nature, very technology-centric. This is absolutely not a negative; in fact, it was one of the reasons that I had always wanted to attend because I am such a DTech junkie.
However, as it turns out, it wasn’t the promise of hearing about, or seeing, the latest devices that had me most excited as I perused the program, setting out my schedule for my busy days in Paris.
No, it was this session on the afternoon of the Thursday that really piqued my interest:
I knew we were off to a good start when session co-chair and first speaker, Dr Lori Laffel, flashed this slide up, announcing ‘Diabetes is Stressful’.
Sometimes, there is an assumption that diabetes technology automatically reduces stress. To a degree – and for some – that may be true. For me, the thought of wearing CGM all the time reduces the stress of not being aware of hypos. But it also adds stress with the never-ending, pervasive data data-feed.
There was also this dichotomy that so many of us face:
Acknowledgement of the terminology we use was a welcome addition to this talk. I think that at times our expectations are not being particularly well managed with the way technology is named.
Expectations were covered again when Dr Kath Barnard took the stage.
I love that Kath discussed the responsibilities of health psychology researchers when it comes to improving the outcomes of tech. She mentioned the importance of developing and using device-specific measures to assess psychosocial impacts on both people with diabetes as well as their carers. Most important was the point of ensuring robust and consistent psychological assessments in clinical trials to better understand participant experiences. This often seems to be a missing component when it comes to researching technology.
This is a recurring theme from Kath: that the juggernaut of diabetes technology advances needs to stop being only about button pushing and changes to clinical outcomes if their full potential is to be realised.
It’s important to note Kath is not anti-tech – in fact she frequently acknowledged the ground-breaking nature and significant potential of diabetes technologies. But her dedication to individualising technology use for each person with diabetes is her over-riding message.
Overall, the take-home from this whole session was this comment from Kath, which became a mantra for me for the remainder of the meeting:
Next up, Dr Andrea Scraramuzza from Italy explored the human factor in technology in paediatric diabetes, however his talk was relevant to adults too. Human Factor brings together information from psychology, education, engineering and design to focus on the individual and their interaction with products, technology and their environments with the aim of better understanding the connection between human and technology.
I really loved this presentation because it brought home the idea that it doesn’t matter how whiz-bang the tech is, if the education is not right, if human limitations are not considered and if people with diabetes are not willing to learn – or clinicians are not willing to teach – the potential of that tech will never be reached.
The session closed with the always brilliant Professor Stephanie Amiel who spoke about hypoglycaemia – specifically, where to go when the technology hasn’t worked. I thought this was a really sensible way to round out the session because it reminded us all that technology is never a silver bullet that will fix all situations. Sometimes, we need to revert to other ideas (possibly alongside the technology) to search for solutions.
I was really grateful for this session at the conference. All too often psychology is ignored when we talk and think tech. The focus is on advances – and the speed of these advances – all of which are, of course, super important.
But it is undeniable that alongside currently available and still-in-development technology is the fact that there is a very personal aspect to it all. Whether it be considerations of actually attaching the tech to our bodies (unfortunately this wasn’t really discussed) or tech fatigue and burnout, or simply not wanting to use the tech, this is the side of diabetes and technology that needs to be researched and understood because how we feel about using the tech absolutely impacts on the results we get from it.
Well done to Professor Tadej Battelino and the ATTD organising committee for including this session in the ATTD program. It really was most useful and hopefully the HCPs and researchers in the room walked out thinking a little differently. I know that there were a lot of advocates in the room who really appreciated the session – because we always are thinking about this side of diabetes!
I do, however, have a challenge for the organising committee. As excellent as this session was, it could have been even better if they had dedicated some of it to hearing from people with diabetes talk about this issues being discussed by the clinicians and researchers. That would have really brought home the message. Perhaps next year…?
My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I have shared my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.
It’s day four of holidays for me. Already lazy mornings, easy days and gentle plans to meet up with friends and family are clearing my mind, and I can feel the backlog of stress and exhaustion – the things that are part of everyday life – start to make way for sharp thinking and smarter decision making.
And in terms of diabetes this means more attention paid to alarms and alerts on my various devices: the calibration alert on my phone for my CGM gets attended to immediately, the low cartridge reminder on my pump is heeded at the first warning. I stop and think before blindly acting, and calmly troubleshoot as I go along.
My head is clearing. I am starting to think about diabetes the way I like, at a level that feels safe and sensible and manageable. I make rational decisions; I take the time to fine tune what I am doing. Diabetes has a place that is comfortable, I feel better overall and far more capable of ‘doing diabetes’.
Earlier this week, the findings from the Diabetes MILES-2 study were launched. (Quick catch-up: MILES stands for Management and Impact for Long-term Empowerment and Success and is the work of the Australian Centre for Behavioural Research in Diabetes (ACBRD). The first MILES survey was conducted back in 2011, with over 3,300 Australians with diabetes taking part. The MILES Youth Report was launched in 2015, reporting the experiences of 781 young people with type 1 diabetes and 826 of their parents. This study formed part of the NDSS Young People with Diabetes Project for which I am the National Program Manager.)
The MILES reboot (Diabetes MILES-2) once again provides a snapshot of the emotional wellbeing and psychosocial needs of Australian adults living with diabetes. Over 2,300 people participated in this study and the results are comparable to those from the first MILES study. The Diabetes MILES-2 survey included the addition of some issues that had not been investigated in MILES, such as diabetes stigma.
Some key findings from the report include:
- 17% of survey respondents had been diagnosed with a mental health problem at some point of their life
- The respondents most likely to experience moderate-to-severe depression and anxiety were those with insulin treated type 2 diabetes
- The respondents most likely to experience severe diabetes distress were those with type 1 diabetes
- The aspects of life reported by all respondents as being negatively impacted by diabetes included emotional well-being (for those with type 1 diabetes) and dietary freedom (for those with type 2 diabetes)
- More stigma was experienced by people with type 2 diabetes using insulin as compared with people with type 2 diabetes not using insulin
Anyone affected by diabetes knows that the psychological and emotional side of diabetes is as much a part of the game as the clinical tasks. In fact, for me, it is the most difficult to deal with. What’s going on in my head directly affects how the I am able to manage the practical side of the condition.
When my head is clear – the way it is slowly, but surely becoming as I settle into holiday mode – and I have time and space to rationally think about, and focus on diabetes, the routine tasks seem manageable. The numbers present as nothing more than pieces of information: they allow me to make decisions, act, or not act. I am able to be practical and seem to have my act far more together.
But for the most part, diabetes is not like that for me. I don’t manage my diabetes the way I want and that is mostly because I am simply unable to due to the distress and anxiety I feel about living with a chronic health condition that terrifies me a lot of the time. I feel overwhelmed and, in the mess of life, diabetes becomes impossible. I am not proud of this – but I am honest about it.
If I am perfectly truthful, there is nothing in this report that surprises me. But it does provide validation for how I am feeling – and how many others with diabetes are feeling too. And I am so pleased that there is evidence to support what so many of us who live with diabetes feel.
It’s no secret that I am a very big fan of the ACBRD’s work. Diabetes MILES-2 once again shines a light on the ‘other side’ of diabetes and serves as a reminder that unless the psychosocial side of living with this condition is addressed, we simply can’t manage well the physical side. And it forces those who want to believe that diabetes is a matter of nothing more than numbers and mathematical equations to consider the emotional wellbeing of those of us living with diabetes each and every day.
Last night, I was lucky enough to attend the 2015 Research Australia Awards Dinner and celebrate the best in Australian health and medical research, and advocacy
The reason I was there was to tweet. Actually, that’s not the truth, but I thought I should mention it considering that both emcee, (ABC’s national health reporter) Sophie Scott, and Diabetes Australia CEO, Greg Johnson made particular reference to it when addressing the audience.
The real reason I was there was because Diabetes Australia was awarding its annual Outstanding Award for Diabetes Research.
This year’s winner of the award is the inimitable Professor Peter Colman from the Royal Melbourne Hospital.
I could spend words and words and words explaining why Peter is a worthy recipient (read here for just some of his wonderful work). Anyone who knows him – or knows of him – would understand why he was a most deserved winner. His acceptance speech was, as expected, humble and appreciative. And he offered an insightful perspective of diabetes research.
The other highlight for me was the Advocacy award which this year went to brother and sister team Connie and Samuel Johnson who are responsible for Love Your Sister. Connie is living with terminal breast cancer and together with her brother has been raising awareness about the importance of young women being ‘breast aware’ and raising money for breast cancer research at the Garvan Institute.
Connie gave an impassioned speech about why medical research is critical to cancer. She implored that we need to stop the misconception that thinking positive cures cancer. ‘The real fact of the matter is that medicine cures cancer,’ she said. ‘Not postive thinking; not prayers.’
Obviously, Connie was speaking to a room full of researches; she was preaching to the converted. But she is absolutely right. Advances in medicine and improved outcomes – whether in cancer, diabetes or other health conditions – are due to research. They are not due to people being optimistic and cheerful.
I like to think that I am a very positive person, but no amount of positive thinking is going to beat my BGLs into submission or frighten my beta cells back into action.
That doesn’t mean that I am throwing myself a pity party, and I certainly don’t think that is what Connie was suggesting. For me the balance is this: feeling positive or having a positive attitude is all good and well, and it probably does make the day-to-day acceptance of living with diabetes easier. But it is the insulin, the devices and the tools I use that actually treat my condition.
We need more money going into medical research. We need to reward our medical researchers for their work and commitment and dedication. I was honoured to be in a room full of these incredible people last night and so glad that I got to personally thank and congratulate one of my diabetes research heroes.
(All this reminded me of this e-card which is cheeky, but makes me laugh every time I see it!)
One of my (very frequent) criticisms of diabetes conferences – especially here in Australia – is that there is not enough input from people with diabetes. The very people who are the reason that these conferences exist are largely silent and very, very invisible.
This year, however, I am so pleased to say that even though there may not be many of us storming the halls of the Adelaide Convention Centre, the voices of people with diabetes are being heard very, very loudly.
The day kicked off with a breakfast celebrating the 10th anniversary of the OzDAFNE program. There, in between discussions about the program was a video showing people who had completed DAFNE sharing their thoughts about the course.
I then headed to an often-challenging session on hypoglycaemia, where Dr Christel Hendrieckx from the ACBRD, in her session about the emotional and behavioural consequences of hypoglycaemia, dedicated a slide to quotes from this Diabetogenic post about the language we use when referring to mild and severe hypos. I am not sure that I have ever been prouder. (I also completely broke the no photos rule with this, but they are my words, so I thought I would be safe!)
In the next session , diabetes educator, Virginia Hagger (also from the ACBRD), spoke about the TEAM T1 Program. Once again, interspersed between stats and explanations of the program, quotes from teens who had attended TEAM T1 were read out, highlighting how the course helped them.
Virginia spoke again later in the day, this time about the Diabetes MILES Youth report and played the video used at the launch of the report (and shared on this post) for the audience. The words used to explain how young people feel about living with diabetes are powerful and their impact is significant.
Amelia Lake from the ACBRD (you’ve noticed the common theme here, right?) spoke about the development of a resource about young people with type 2 diabetes and retinal screening. She too provided great insight into how young adults with type 2 diabetes feel about eye checks by sharing quotes of their experiences.
While it would indeed be wonderful to have people with diabetes sitting in sessions, and standing on the podium lending their voice to provide the practical side of the theory often being discussed, incorporating the words of many into talks is a powerful and effective way to hear from us. Plus it means that there is never only one voice – which can at times seem tokenistic – being heard. Instead there are many – every single one important as the next.
I went to TV Land today to do an interview on a morning show about the artificial pancreas. I am always excited to see type 1 diabetes in the spotlight. Actually, I am always excited and pleased to see any diabetes in the spotlight, provided the reporting is accurate and the information devoid of any myths. And they don’t use the word ‘sufferer’.
I was a little anxious to speak about the artificial pancreas. It was being hailed as a ‘diabetes breakthrough’, which is a little misleading given that the trials for this technology have been underway for some time now. I am always very careful when talking about research and emerging technologies, making sure whatever I say is in context – I don’t ever want to be accused of promising something will be here, available for all, in ‘five years time’. In fact, I had made it really clear when speaking with the producer prior to the interview that this is NOT a cure and that it would probably be better that the word ‘cure’ not even be mentioned.
So, I was asked about how the AP would change things for people and what it would mean and gently speculated (based on a few things I’d read recently about current trials) as to when it would be available. I was a little hesitant at the ‘and what will it cost?’ question, because 1. Who knows? and 2. The answer is most likely ‘Out of reach for most people. Which sucks!’ and I didn’t think that would be a good thing to say on TV when I was doing my best to sound professional.
I’ve not seen the clip from this morning yet. Trying to focus on a camera, and listen to people I can’t actually see (they were in Sydney, I was in a dingy box of a room in Melbourne) and not wipe my Bold and the Beautiful-esque make up off whilst flattening my big hair was really not ideal for coming across as poised and professional. But I didn’t giggle uncontrollably. And managed not to swear. So, I think (hope) it was okay!
I got into a cab outside the studio when it was all over and the driver asked me if I was famous. (I would suggest the need to ask that question would also provide the answer, but whatever.) ‘Ha! Ah, no. Really. No,’ I said to him. ‘I was interviewed about diabetes research.’
‘About a cure? My son has type 1 diabetes,’ he turned around to look at me.
I looked back at him. I looked at the desperate look on his face. I know that look – I’ve seen it thousands of time. I’ve worn it thousands of time.
‘No. I’m sorry.’ I said. ‘It was about a potential breakthrough in technology – a new device that may be available in coming years. It will make things easier. But it’s not a cure.’
He looked away, disheartened.
‘I’m sorry. Really. I’m sorry.’
I looked out the window as the cab sped through the city, the buildings all shiny from the rain. And right at that moment, I felt as despondent as my cab driver looked.
UPDATE – You can watch here.
We know there are many factors that come into play when it comes to managing life with a chronic health condition. Our attitude, outlook, strength and mindset all play an important role.
But what about our personality? Do our personality traits affect the way we deal with living with diabetes?
Well, of course!
If our personality defines the sort of person we are then it stands to reason that our personality traits will play a part in how we view and respond to everything – including the day to day living with diabetes.
The Big Five personality traits in psychology are openness (to experience), conscientiousness, extraversion, agreeableness and neuroticism, all of which I believe, in my very non-scientific approach, impact on our attitude to and way we live with diabetes.
I consider myself to be pretty open to experience, not especially conscientious (I have so little self-discipline it’s not funny…pass me another doughnut. Thank you.), extraverted, agreeable and not particularly neurotic or anxious (unless talking about eye complications and a worry that the world Nutella supply may be in threat).
The way the cards have fallen to determine my personality is not necessarily useful when it comes to managing diabetes. Surely having a high level of conscientiousness is king when it comes to managing something like diabetes! (I’ll use this as the reason that I have never, ever kept a regular BGL diary….)
However, being open to new ideas has definitely been of use when it comes to being an early adopter of diabetes technology or considering an out of the box way to manage a difficult diabetes problem. And extraversion and seeking the company of others to crowd source information and learn about others’ experiences and learnings with diabetes has been nothing but positive in my diabetes management. Being secure and confident in my decision making and abilities rather than neurotic and second guessing myself definitely helps in making decisions, sticking to them and owning how I choose to manage things.
These traits determine how I see and how I live with diabetes each and every day.
But could our personality have something to do with actually developing health conditions? (No – this has nothing to do with lack of self-love causing auto-immune conditions. ‘Cause that’s a load of C R A P.)
This study looked into a link between personality and health, specifically how different personality traits impacted biological immune responses. (This article breaks it down nicely for simpleton folk like yours truly to understand.)
One of the findings of the study is that people defined as have an extroverted personality have more pro-inflammatory genes which means that we may be better at fighting off illness. The negative side of this is that ‘over-alert’ pro-inflammatory genes can also result in an increased incidence of autoimmune conditions.
In my highly non-scientific study of n=1, this rings true. I am overall pretty healthy and manage to avoid catching (most) everyday viruses. Good work, autoimmune system!
I also collect autoimmune conditions (last count – I have three). Not such great work, immune system!
As with many studies, there are still lots of questions to be answered. In a chicken/egg type scenario, there is no answer to what is causing what? Is it our personality that determines our immune system or is it the other way around?
Trying to piece together the puzzle of autoimmune conditions is a long road. I will never ever understand how it is that I developed diabetes at the exact point that I did. Whist I understand the genetic predisposition component, the trigger aspect has me scratching my head to this day.
But this is another little piece slotted into place in what is looking to be a one bazillion piece puzzle.
Last week, Australian social and mainstream media was abuzz with exciting news of a diabetes breakthrough. This filtered through to international media.
Labelled as an artificial pancreas, the new device was covered in online and print newspapers, as well as television news bulletins. The reason for the excitement at home was because Australia is the launch market for this new technology.
Well, yes and no.
The device in question was not really an artificial pancreas. Rather, it is the next generation integrated pump/CGM system to be launched globally.
Technology advances are really important and we should get excited about them, and their promise of improving the lives of people with diabetes.
But reporting honestly and correctly is also really important.
Let’s be clear about the device that was launched last week. It is a pump with a CGM. The real advance is that together they have the potential to predict hypos and turn off insulin delivery, thus (hopefully) preventing hypos.
This is, indeed, an advance in technology.
This is not, however, an artificial pancreas.
There are a number of problems when diabetes advancements are not communicated effectively and correctly. Firstly, the way the reports read last week, this technology would eradicate hypos completely. As far as hopes for diabetes go, living hypo-free is surely something we would all dearly love.
But while this tech MAY help in reducing hypos, it’s certainly not going to eradicate them.
There are still problems with sensor accuracy that need to be addressed before we can be comfortable in saying that CGM technology (whether purely as a ‘warning system’ for impending hypos or being combined with a pump that will switch of insulin administration) removes the risk (and associated fear) of low blood sugar.
Whilst this technology is a step in the right direction, it is not an artificial pancreas. It is not the holy grail.
Diabetes still needs attention, still needs research, still needs funding, still needs donations. We are not there yet, and any report that even suggests that is, I believe, detrimental to continued efforts looking to further improve diabetes management.
All of us who are communicating in any way about diabetes have a responsibility to be truthful, honest and, as much as possible, devoid of sensationalism.
Get it right when we are taking about it and hopefully the mainstream media – who, let’s be honest, have an incredibly rudimentary knowledge base when it comes to diabetes – will hopefully follow suit.
I am really excited about the potential of this new pump and GGM combination and I am fully aware that it may be of significant benefit to many people living with diabetes. I know just how beneficial CGM technology is.
But tell it like it is. Report responsibly. And keep the understanding of what living with diabetes – and the technology we use – real.
This is just so beautiful! Enjoy for your Friday and have a great weekend.
Diabetes research funding – simply not enough
Last Friday, the successful National Health and Medical Research Council (NHMRC) grant recipients were announced.
Let’s start with the good news.
Funding for 848 grants was announced, totalling over $580 million across a wide range of health conditions. This includes project grants, partnership projects, Centres of Research Excellence and other Fellowships and grants.
This is great stuff. Medical research is essential and we should be encouraging more dollars being delivered to the very clever clinicians, researchers and scientists carrying out this important work. ‘Cures not Cuts’ is a motto we should be thinking about all the time – not only when there is a real or perceived threat to funding dollars.
Here is the not so good news.
Diabetes received $54 million in grants for 60 research projects.
That’s right. The good news is also the bad news. Whilst it is terrific that 60 research projects received funding and $54 million is not to be sneezed at, I do not believe that it is enough.
Cancer received funding of $89.9 million for 156 projects, and cardiovascular disease $82.4 million across 106 grants. All of these are worthy and should be funded. Make no mistake – I am not saying that money should not be given to cancer or CVD research. Of course I am not.
I am told that when funding announcements are made, there is also dissatisfaction amongst the cancer community, with many ‘lower profile’ cancers often being overlooked. Ovarian, pancreatic and lung cancer are frequently considered the poor cousins of the cancer world, despite significant numbers of people being affected by – and dying from – these cancers.
Of course, we can argue that the money is never enough. We can argue that we are all self-interested and only care about our own condition or the condition affecting our family and friends and to a degree, that is absolutely true.
Please understand, I am not saying that diabetes is worse than any other disease or health condition. Any regular readers of this blog will know that I absolutely do not subscribe to the ‘my condition is worse than yours’ arguments.
But if we are to believe that the magnitude of the ‘diabetes problem’ – and there is some pretty compelling evidence to support that it will indeed be the largest health burden in Australia by 2017 – then surely we need to see a bigger investment into diabetes research. We need diabetes to be’ top of mind’ as the number one health concern.
The results of last Friday’s funding announcements reinforce what I wrote here about diabetes having an image problem when it comes to funding – and fundraising. With more and more people affected, surely this should be reflected in increased funding for research, programs and services.
We’re not seeing that.
At the risk of this outing me as someone with a case of sour grapes, I should acknowledge that I am listed as an Associate Investigator on a grant application that was not successful. Yes, I am disappointed. But this certainly was not the only diabetes grant that was unsuccessful. Many other very worthwhile applications faced a similar fate.
Congratulations to all the successful applicants.
We need hope. I know that every day I live in great hope.
- Hope that I will find the perfect pair of jeans in the perfect blue colour that make my legs look long and slender, my backside look perfect and that fit comfortably around the waist.
- Hope that I will walk into my office one day to find a Nutella vending machine.
- Hope that I will never again be served bad coffee.
- Hope that my daughter will grow up in a world of equality for all.
- Hope that when I get home today all the washing from our recent overseas trip will have been done, folded and put away.
- Hope that I will walk into a vintage store and find an original (non-replica) Eames arm chair and ottoman for $150.
- Hope that the whole cast of West Wing will come together for a movie. Please. Please, please, please, please.
- And hope that diabetes will be cured.
You may have read over the weekend that type 1 diabetes has been cured. This article irresponsibly said the cure is ‘imminent’
I am possibly the world’s greatest cynic when it comes to reading about cures for diabetes. There is much eye rolling, exasperated sighing and sarcastic comments about being unemployed and shutting down this blog because no one will care about type 1 diabetes anymore because it won’t exist.
I simply don’t believe that the cure is ‘just around the corner’ or ‘five years away’.
But let me be really clear about this. I want a cure. I want diabetes to not be a part of my – or anyone’s – life anymore. And I am really, really pleased and eternally grateful that there are people far, far smarter than I working to find the way to a cure.
Feeling hope gives us a reason to believe and sometimes that is all we have to get us through the day.
But equally, I find I can’t put all my faith into believing that there will be a cure for diabetes because if there is not, what happens then?
I understand the need for the hype – it helps with funding and interest and gets people talking. And we need people talking about and funding research into diabetes. More and more and more.
And I do like to hear about the research and breakthroughs that are getting us a step closer to finding a cure.
But I believe that even if we are a step closer, there is still a very long way to go.
So, I take it all with a grain of salt. I read it and file it away. And then I move on. Hopeful. But realistic as well.