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I was slightly mortified at an exchange I heard recently between a person with diabetes and a healthcare professional. The HCP was correcting the PWD, who repeatedly referred to themselves as ‘(a) diabetic’, urging them to not use the word as some find it offensive.

Sometimes, it seems that we forget that the idea of discussing, and hopefully improving, the language used about diabetes is to better the experience of people with diabetes. My personal crusade is not about completely eliminating the word ‘diabetic’, for example.

I know many people with diabetes who use the word – as both a noun and an adjective – and are very comfortable to refer to themselves that way. This piece from Mel Seed at Twice Diabetes explains why she is more than happy to use the word. I appreciated her side of the debate. It all fits neatly into my philosophy of ‘My diabetes, my rules’.

But the point of the whole #LanguageMatters movement is not about people with diabetes defending the language choices we make. It’s about others. The Diabetes Australia Language Position Statement as never intended to be for people with diabetes. It was always for healthcare professionals, the media and the general community.

Rosie Walker, on her Successful Diabetes blog, captured it all perfectly when she said this in a recent post about diabetes language matters:

‘This is not a call for people living with diabetes themselves to ‘mind their language’. Anyone is perfectly free to refer to themselves and their condition however they wish – as in most other areas of life. This is about how other people, and especially health professionals and scientists, use language in relation to diabetes and those with it, and especially when they are not in earshot or attendance…’

When a healthcare professional tells someone with diabetes to not use a word to describe themselves, it’s just another example of trying to control the PWD. In the same way that we want choice about the devices we use or the treatment plan we employ, we demand choice in the words we use to describe ourselves and our diabetes.

I have started a separate page on Diabetogenic about all things #LanguageMatters. Click here or on the link at the top of the page for more. 


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You know that old word play about why we should not assume anything? Because ‘assume’ makes an ‘ass’ out of ‘u’ and ‘me’. Yes, it’s lame and I don’t like using ‘u’ for ‘you’ (because I’m a word nerd and don’t do ‘text speak’), but the sentiment is good.

There are so many assumptions that come with diabetes. And almost all of them are destructive.

‘People with diabetes must have eaten too much <insert food/drink type> as a kid.’

‘People get diabetes because they’re fat.’ 

‘People get diabetes because they don’t exercise.’

‘Diabetes means you are sick.’ 

‘People with diabetes could be managing better if they just tried.’

Many of us will have had these sorts of comments made directly at us. Some of us will have heard people say these things. Most of us will have seen these sorts of comment perpetuated in the media and in popular culture anytime diabetes gets a mention.

And they are all wrong.

It’s time that we removed all negative assumptions and replaced it with just this:

Imagine how different things would be if that was the starting point of diabetes discussions. Instead of the judgement and finger pointing that often is associated with a diabetes diagnosis, the first thing that everyone said was ‘And now let’s talk about living well with it.’ Instead of the threats, the attitude was ‘You can thrive with the right treatment’.

Finding out someone has diabetes does not in any way give you a window into their life or an indication into their behaviour. But it does tell you that they have a health condition that requires regular management and the best possible treatment.

Imagine how much easier life with diabetes would be – and how much kinder the conversation would sound – if the next time we told someone we have diabetes, the only thing we heard was ‘Are you getting the healthcare and treatment you need?’

Wouldn’t that be a great place to start the conversation?

A week away from blogging during what happened to be a super busy week in the diabetes world. Let’s play catch up!

ICYMI #1

Bigfoot Biomedical + Abbott Diabetes Care. Details here. Great commentary from diaTribe here, and Diabetes Mine here.

ICYMI #2

Did you see Adam Browne’s piece on diaTribe about the worst food advice he’s received?

When I was diagnosed I was told ‘Eat as much low GI food as you like’ and I remember at the time that not sitting well with me. It turned out to be a disaster because I wasn’t taught to count carbs, but there was this expectation that I would be eating large quantities of rice, pasta, bread and potatoes to match the insulin dose I was prescribed.

I do wonder how different things would be had I instead been given advice that helped me manage my glucose levels, rather than feel I was constantly scuffling with them!

Vaccine buzz

I’ve always been interested in the research developing vaccinations to prevent T1D. This out of Finland was doing the rounds yesterday.

I for one welcome our new robot doctors

This article from Forbes is all about how robots will be taking on an increased role in healthcare.

#LanguageMatters in the UK

After ADA, I wrote that there was some excitement from the UK about developing a language position statement. This blog post from Rosie Walker (Successful Diabetes) and Anne Cooper got the ball rolling in terms of getting some feedback from people with diabetes with a call out for people to have their say.

(And there is a tweet chat about this very topic, which for those playing at home (i.e. Australia) kicks off on Wednesday morning at 5am. I’m going to try to be there, but seriously, I suspect I’ll read up on it at a decent hour once the coffee kicks in!)

And while we’re talking language

I am interested in language beyond just the diabetes space and was interested to read this piece about US Senator John McCain’s diagnosis of brain cancer and the inevitable rhetoric that followed. Many promised that Senator McCain would survive because he is a ‘fighter’ and a ‘battler’.

I don’t like using this sort of language to discuss health conditions, because in a fight, there is always a winner and a loser. And it suggests that people who do not survive must not have fought or battled hard enough when we know that is absolutely not true.

Why I write…

There was a lot in this piece on Medivizor from Stephanie Zimmerman, where she shares why she writes about healthcare.

Type 1 and the egg

This is a beautiful and so simple metaphor by  Maureen, who tweets as @MumofType1 to explain what living with type 1 is all about for her son.

How much access do you have to your HCP notes?

This study looked into the experiences of healthcare users with reading and providing feedback on their visit notes.

#HelloMyNameIs heading to Sydney

If you are in Sydney on 26 September, you may be interested in this free event about the #HelloMyNameIs campaign which was created by Dr Kate Granger, (I wrote about the campaign here). This week marks the anniversary of Kate’s death, and her husband, Chris Pointon, will speak about the movement. 

And finally something funny…except it’s not

Gwyneth Paltrow is an acteress, so why anyone would seek medical advice from her is a little confusing. But apparently, she has armed herself with a team of healthcare hacks professionals so that she feels that she is more than qualified to sprout wellness rubbish.

In recent times she has faced the wrath of the science community on Twitter because, amongst other absurd ideas, she suggested that women should shove a jade egg up their vaginas to…actually, I’m not really sure why. I’m not going to comment on that (beyond saying: don’t do it) because superhero OB/GYN Dr Jen Gunter has already done that.

But when one of her healthcare hacks starts talking about autoimmune conditions, you bet I’m going to chime in. Especially, when one of them, Dr Steven Gundry, claims this: ‘I have yet to see an autoimmune disease that cannot be cured or put into remission by simple dietary changes and supplementation’ and then goes on to suggest which supplements will cure autoimmune diseases. Stop it!

Gwyneth – I really liked you in that movie about deadly viruses (possibly because you died in the first 15 mins), but you need to really shush now about healthcare. And stop suggesting women shove jade eggs up our vaginas, for god’s sake!

 

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.

Yesterday, I wrote a quick review of the language session at #2017ADA and my excitement as I anticipated the session.

I don’t want to sound Grinch-like, but I walked out of the session feeling less enthused than I had when I walked in. That’s not because the speakers weren’t good. They hit the mark and said all the right things.

And it’s not because I am not excited to see the ADA and AADE developing and getting ready to launch their Language Consensus Statement (it’s due out in August). I am; I am so excited!

It’s because I didn’t hear anything new, and the time has come for us to do something more with language matters. Because, #LanguageMatters.

It was six years ago that Diabetes Australia launched ‘A New Language for Diabetes’ position statement. In collaboration with the Australian Centre for Behavioural Research in Diabetes, Diabetes Australia wanted a concise, easily shareable document that could straightforwardly and succinctly explain how to communicate with and about people with diabetes. Unapologetically, it called out the words that harmed and offered replacements that were more inclusive, less judgemental, all in an attempt to use language that didn’t make us feel like we were constantly failing at life with diabetes.

Six years is a long time in diabetes. Disappointingly, there’s still a lot that’s not great about the way diabetes is discussed in the media, in healthcare settings and, unfortunately, by healthcare professionals. We haven’t reached a position of respect; we have not managed to leave all judgement at the door when speaking about diabetes; we have not even started to eliminate stigma.

When the Language Position Statement was initially launched in Australia, I saw it very much as as first and most welcome step. Was it perfect? No. It was a starting point, not the end of it all.

It was never considered as definitive document, but it certainly a great place to begin; a living resource that could evolve. As the ACBRD did more and more work in the stigma space, it became very clear that words do indeed matter, and Diabetes Australia took the evidence and continued to push the envelope and innovate in this previously unexplored space.

Perhaps that’s not actually a correct statement. Language and words had long been on the radar of people living with diabetes. Diabetes camps had stopped using words such as ‘good’ and ‘bad’ to describe glucose numbers; the debate on the word ‘diabetic’ had been going for years, and many rallied against the words used that blamed, judged and slurred people with diabetes – whether it be for developing diabetes in the first place, or how well we are managing it.

But the Language Position Statement was the first time that it was all there in one neat document, backed by evidence to support the thoughts of PWD. (Jane Speight and I gave a number of talks which started with me ranting and waving my hands around about how language and words affects those of us living with diabetes, and concluded with Jane stepping up to present the evidence. Those talks packed a punch and made it very difficult for people to ignore the issue or to keep referring to it as political correctness gone mad.)

But now, six years on, I want more. I don’t want it to just be a debate about whether or not we use the word ‘diabetic’ (although this is still an important issue). We get waylaid when that is our whole focus, and I feel that anywhere that is just now coming to the language party needs to be a step ahead of the development of a language position statement. That’s been done and has been in circulation for over half a decade. Use it, adapt it, rebrand it and make it your own, but I’m not sure there is a need to recreate the wheel and start from scratch?

Not when there is still a lot more to do.

What’s the next frontier in language and diabetes? Maybe it’s diabetes conferences.

Because, they are a mess, with many presentations still peppered with words such as ‘non-compliant, non-adherent, poor control’, or referring to participants in research as ‘subjects’, and often (and sadly) a not a great understanding of the difficulties of living with diabetes.

With a Language Positions Statement already in existence, a great (and simple!) start to remedy these shortcomings could be for conference organisers to send a copy of it to all speakers, explaining there is an expectation that slide decks and talks will be in line with the document and its recommendations. And while they’re at it, the same expectations should be in place for anyone showing in the exhibition hall at the conference, or writing about the event. Along with embargo regulations, press corps could also be sent the position statement.

We know that organisations have the capacity to be vigilant – perhaps had the ADA put effort into urging appropriate use of language at the conference instead of enforcing their archaic photo ban, they wouldn’t have been hit so hard on the socials.

It’s time for us all to expect more and to demand better. How are YOU going to do that?

‘What was your favourite thing about ADA?’

I’ve been asked this question a few times now since returning from San Diego. And even though the meeting was so busy, with a lot of super interesting information being shared, it was actually an easy question for me to answer.

‘Language’, I answer without hesitating. ‘Specifically, that language was on the agenda at the meeting for the first time.’

On Sunday, there was a whole session dedicated to language in diabetes: ADA – AADE Joint Consensus Statement on the Use of Language in Diabetes. I attended eagerly because, of course, #LanguageMatters is my thing. It’s also the ‘thing’ of others far smarter than me, including these two women who let me sit with them and jump up and down like an excited puppy:


Professor Jane Speight led the development of the Diabetes Australia Language Position Statement, and Ann Morris, last year’s Australia Diabetes Educator of the Year, has been a champion of people with diabetes for a very long time.

There were some highlights in the language session for me, particularly from the first speaker, Dr Jane Dickinson. Jane recently wrote about a piece for Diabetes Spectrum about the effect of language on diabetes. She has type 1 diabetes herself and is a CDE, and her presentation was peppered with personal experiences of the role of language in diabetes care. (You can read more from Jane via her blog here.)

One particular comment Jane made really highlighted the rock and hard place between which PWD often find ourselves:

Susan Guzman was the second speaker and she pointed out that words not only affect the person with diabetes, but also create a bias for people working with us. The second that a PWD is described as ‘non-compliant’, ‘uncontrolled’ or that they ‘don’t care’, HCPs feel differently about the person. Appropriate language use isn’t important only for the person living with diabetes. It also matters if we want those working with us to treat us respectfully.

The final speaker was Melinda Maryniuk, CDE, from the Joslin Center and she spoke about the ADA-AADE Language Consensus Statement, and the five guiding principles that form the basis of the document as captured in this tweet from @MarkHarmel:

It’s not surprising that I was excited that this session was on the program. It was the first event I added to my calendar and I rearranged meetings to ensure that I didn’t miss it.

But I left wanting more.  A lot more. And tomorrow, I’ll write about why.

Back from the ADA conference after whirlwind few days in San Diego which basically involved 19-hour days sandwiched between the first day (and 8-hour meeting) and the final day (a couple of short meetings before heading to the airport to fly home). Unsurprisingly, I slept most of the way home.

There were some absolute standouts of the meeting and here they are in super quick dot points. Some I’ll write about in more detail when I’ve finished hugging my family and infusing Melbourne coffee back into my exhausted body.

PR Fail

The ADA’s PR machine needs attention after the completely misjudged way they dealt with objections to their misplaced and archaic ‘photo ban’. It became the story of the first few days of the meeting and they really will need to reconsider what they do next year. (More on this another time, but here is a good summary from Medscape.)

Innovation away from the conference

While the conference is always full of late-breaking research and an exhibition hall of diabetes technology, the satellite events are often where the real innovation is at! On Friday afternoon, I went to the Diabetes Mine DData-Exchange event and was lucky to see and hear some of the latest and most innovative tech advances happening in diabetes, including lots in the DIY/#WeAreNotWaiting world.

Mostly, the room was full of those who knew what was going on in this space, so there really were only a few people who were surprised that there are many walking around with their own DIY kits, (which always makes me chuckle, especially if it’s a HCP having their mind blown by something PWD have known about and been doing for a while…)

(A bit of a watch this space from me as I am about to embark on my own build, which is slightly terrifying. The only thing giving me any confidence is that I have these two Wonder Women to call on if (when) I am completely lost!)

Wonder Women! Dana Lewis and Melissa Lee and their magical machines.

More at #Ddata17

Life for a Child

The IDF Life for a Child update, annually held at the start of the meeting, was, in equal measure, enlightening and despairing.

In this video, hear from Life for a Child Education Director, Angie Middlehurst, who recently visited the Diabetes Association of Sri Lanka and met some young people benefitting from the Program.

If you would like to consider helping Life for a Child, it costs only $1 per day to provide full diabetes care for a child. That’s right, one dollar a day. If you can, please do donate.

 

With Life for a Child’s Education Director, Angie and Health Systems Reform Specialist, Emma.

 

Who has a meeting at 5.30am?

Anyone who believes these meetings are junkets would reconsider the first time they need to be dressed, coherent, communicative and respectable for a 5.30 session. That’s 5.30am. And on the Saturday morning of the conference, I found myself in a room with a lot of other people (also foolishly awake at that time), to listen to the latest in CGM studies.

Thankfully, the session was super interesting with a lot of very valuable information being shared. (I really would have been pissed if I got up and it was a waste of time…)

Dr Steven Edelman from TCOYD was, as always, enlightening and added a most important ‘personal touch’ as he shared some of his own experiences of CGM. And some brilliantly relevant sound bites to remind the audience that while they may be focused on the machines and the algorithms and the clinical outcomes, this is about people living with diabetes.

Trying to tweet everything Dr Steven Edelman was saying…

Diabetes Hands Foundation wake

The news about the closure of the Diabetes Hands Foundation, and the move of its forums to Beyond Type 1 was met with sadness, but also a lot of optimism. Innovators in the online community, DHF was the first online diabetes network I ever felt a part of. It spoke to me, but mostly, it was inclusive. That’s what happens when you have people like Manny Hernandez, and later Melissa Lee, at the helm, and a team around you of people like Mila, Corrina, Emily and Mike.

DHF founder, Manny Hernandez.

We farewelled the DHF at a wake in a bar on 5th Ave in San Diego on Saturday evening and the love and gratitude for DHF was overwhelming. Melissa asked us to recall DHF’s Word in Your Hand campaign as a tribute to Manny and DHF.

My word on my hand… We can always use more of this.

I’m honoured to have been a part of it.

Language

Oh yeah, there was a language session at #2017ADA and I have PLENTY to say about it. Maybe next week….

Sex, Insulin and Rock ‘n’ Roll

The team from Insulet threw an event on Sunday night way up in the sky, overlooking Petco Ballpark, home to the San Diego Padres, and we were presented with a panel of diabetes advocates prepared to talk about anything and everything. Brilliant in the way it was candid, unashamedly open and, possibly for some, confronting. Well done to the panel members who really were prepared to answer every question with personal insight and experience. This format really should be rolled-out as widely as possible to as many people as possible to help breakdown any embarrassment, or idea that there are taboo topics in diabetes.

Children with Diabetes

I was lucky enough to be invited to attend the annual CWD-ISPAD dinner on Monday night and speak with a number of healthcare professionals working to improve the lives of children living with diabetes.

Jeff Hitchcock, founder of CWD, is a personal friend now. I guess that’s what happens after you attend a Friends for Life conference and are welcomed into the family. FFL Orlando is taking palce in three weeks and my family’s time at FFL remains one of the most overwhelming and positive experiences of my life with diabetes.

I caught up with Jeff a few times throughout the conference to speak about the organisation’s work. He gave me a CWD medallion, which is now firmly wedged in my wallet as a reminder of not only my FFL experience, but also value of Children with Diabetes.

diaTribe

I could complain about my 19-hour days, but then I think about Kelly Close from diaTribe and then feel sheepish for even suggesting that I’m working hard! On the final night of the conference, diaTribe hosted three events and I attended the later two: Musings Under the Moon and Musings After Hours.

These events bring together leaders in diabetes technology and innovation and digital health and offer an opportunity to ask questions and challenge (and be challenged!) in a far less formal situation that the official ADA conference. For me, this is where I learn the most as the speakers are prompted by hosts Kelly and Adam Browne to really reflect on where we are going in diabetes innovation. My only misgiving about these events is that there are not enough people attending. That’s not to say that the spaces were not packed to the brim – they absolutely were. But I do wonder if  perhaps it’s the people who really need to hear the realities of diabetes technology are not in the room…

MedAngel

I meet Amin from MedAngel as part of my time with the European Roche Blogger Group. Amin has created an easy-to-use sensor and app to help people with diabetes ensure insulin is kept at the right temperature. More about this another day, but in the meantime (after I’ve been using my sensor for a while), you can read about it here.

Learning all about MedAngel, with Amin.

Take aways

ADA is a very large conference. There is a lot going on, there are a lot of people around and I always leave with a lot to think about. Over the next few days…weeks…I’ll start to gain some clarity about a lot of what I saw, heard and learnt. It’s always the way after a big meeting like this one.

Someone asked me if I enjoyed the meeting and I suggested that was probably the wrong word to use. It was very worthwhile. I learnt plenty. I was able to catch up with advocates in the space who continue to push boundaries and lead the way in insisting that all work in the diabetes space is ‘person-centred’. People with diabetes are expected at this conference and seeing us as just being there – rather than having to fight for our place – inspires me to keep working better and harder.

Disclosures

I attended the ADA Scientific Sessions as part of my role at Diabetes Australia who covered my expenses, except for my first two nights’ accommodation which were covered by the International Diabetes Foundation so I could participate in meetings for the World Diabetes Congress where I am Deputy Lead for the Living with Diabetes Stream. 

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: kathbarnard

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…?

Disclosures

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.

Paris was, as always, wonderful. The mild weather, meant it was lovely to walk everywhere. With only three and a half days in one of my favourite cities, I was grateful for the daily 40-minute stroll from the hotel near the Eiffel Tower via the Trocadero to the conference centre so that I at least get to see some of the city.

Even early morning meetings were bearable with views like these. (Hashtag: not photoshopped!)

Sunrise behind the Eiffel Tower.

On my first full day in the city, I attended an event hosted by Roche (all my disclosures are at the end of yesterday’s and today’s posts, as always). The Blogger #DiabetesMeetUp brought together almost 40 bloggers from across Europe. And me.

The day’s activities were a continuation of their event at EASD last year (read about that here), although attendance was expanded to also include a contingent of fabulous women from Italy. It was actually the fourth #DiabetesMeetUp event hosted by Roche with many of the attendees having been to all of them. (There was a comment when I tweeted a photo of the day that the group didn’t look particularly diverse. I’m flagging that here because I acknowledge the privilege in the room. I do think that it is important to ask how better representation can be achieved. The flip side is that the event targets bloggers, so there is already a bias for well-connected and informed people. I have no answers….)  

Just some of the bloggers…

The day was busy and very interesting. I have been an extremely vocal critic of device companies failing to engage with consumers in the early stages of device and software development. It frustrates me no end when I hear of the limited and barely tokenistic engagement undertaken by device companies so Roche’s approach is truly a breath of fresh air.

It was also pleasing that while some of the day was dedicated to showcasing product, there was a lot more than that on the agenda. Plus, all product presentations were an opportunity for the bloggers to provide feedback, plus there was plenty of frank discussion from both attendees and Roche staff.

So, what devices where on show? There was some more about the Roche Insight CGM, mostly about the app that is being developed to accompany the device. When this was discussed at the EASD #Diabetes Meetup last year, there were many suggestions and recommendations about how to improve the app platform. It was utterly brilliant to see a lot of those changes integrated in the new design. Obviously it’s a lot easier to make changes to software rather than hardware, but still this focus on gathering feedback and then making the changes is commendable.

One of the most exciting aspects of the discussion for me was the discussion around the Insight systems alarms, specifically the language being used. Some of the words and phrases were flagged as not being quite right, and there was an opportunity to wordsmith just what language would be used. For example, the term being used was ‘warning system’ and I questioned if that was really the best word available. I think of ‘warnings’ as something connected to inclement weather or danger on the roads, not really ideal when thinking about data I use to help manage a health condition each and every day.

Talking language. It was hard to get the microphone away from me.

The customisation of this system is outstanding. Other than the super-low (safety) alarm, all others are fully customisable, can can be activated for certain times of the day, use different sounds for different alarms for different times and the user can build up to ten daily profiles. The objective for such thorough customisation is to work towards reducing alarm fatigue as well as create a more flexible, individualised and intelligent alarm system

As yet, there is still no integration with the Insight CGM and the Insight pump – a criticism and recommendation from the group back at EASD last year, however I believe this is on the radar. Undoubtedly, the feedback from the group was that this is essential, so I hope that the Roche team find a way to make it happen!

The other product that was (very briefly) discussed was the Senseonics Eversense system – a ninety day implantable CGM sensor and data management system. This tech is currently in trial stage and more information can be found here.

Roche gave all the Blogger #DiabetesMeetUp attendees a press pass to ATTD which meant that throughout the remainder of the conference, there was a significant consumer contingent roaming the halls and sitting in sessions. Considering that this is a group of highly connected, tech-savvy and smart individuals, it was terrific that there was the opportunity to be part of the conference amongst the health professionals.

I’m really grateful to have been offered the opportunity to attend the day – a very big thank you to Ute and the team from Roche for extending an invitation to me (I promise, I am not always the jet lagged mess you see at these events!) and for your ongoing commitment to engaging the community. As well as participating in the agenda set by Roche, I was able to speak to some amazing and activists who each day are advocating for people with diabetes in their own countries. The level or excitement and commitment to what they do simply never wanes.

Disclosures

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 will be sharing my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

Last week, my Timehop app reminded me of this snapshot in time.

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This photo was taken at the 2013 International Diabetes Federation’s World Diabetes Congress in Melbourne, and that look on my face is of pure anger. I was listening to a speaker – a doctor – referring to ‘non-compliant diabetics’ as he was telling of the ‘poor outcomes’ of ‘patients’ in his practise.

The old language chestnut came up again on the second day of the #MayoInOZ conference during the innovation showcase was held. In this session, nine speakers were each given five minutes to present how they are using social and digital tools to improve healthcare. (This is where Kim spoke about #OzDOC and how healthcare professionals use the hourly tweetchat as an opportunity to engage and learn from people with diabetes.)

The final speaker in the innovation sessions was a late addition and it was great to see diabetes again being represented. I know I am biased, but I do always get excited when I see diabetes on the program!

Andy Benson from Coffs Endocrine and Diabetes Centre presented on the project she has been working on: telling the story of diabetes in a series of documentaries to be screened on the BBC.

So, first things first. I love this idea. I am a huge fan of having diabetes out in the ‘public’ space, pulling it out from diabetes groups and diabetes-specific forums, because in most of these cases, we’re preaching to the converted. It’s one of the reasons I love writing for Mamamia Women’s Network where I know that most of the readers probably don’t already have a connection to diabetes.

If these documentaries are screened on the BBC, imagine the audience! It is so refreshing to see people thinking outside the box and looking for ways to present to a new audience – and to tell stories, real stories of real people who actually live each day with diabetes.

Andy showed two short video clips from the still-in-development documentaries. As healthcare professionals on screen spoke about diabetes, I automatically prickled, my language and stigma sensors being alerted straight away.

I wasn’t the only one. In a room with two other diabetes advocates – Kim, Melinda Seed (Once Diabetes), as well as several very vocal health advocates and activists, there was a sense of discomfort at what we were seeing.

I inhaled – maybe ‘gasped’ is a better word – when one of the HCPs used the words ‘diabetes plague’ in his introductory words. There was an undeniable sense of blaming the person with diabetes in the words being used and the sentiments being expressed.

The Twitter conversation from both people in the room and those following along was honest and candid. And, quite frankly, it was uncomfortable too. Andy had disclosed that she has type 1 diabetes, and I didn’t want to be actively criticising the work of a fellow PWD.

However, I could not keep quiet either. When Andy came over to chat after her talk, we had a very open discussion. I was probably quite blunt in my comments.

It is not okay to use language that is stigmatising. The format of the information being presented (i.e. unscripted interviews) doesn’t preclude anyone from being courteous and respectful, and I don’t believe that PWD were being treated either courteously or respectfully in the way about which we were being spoken.

I understand that there is a desire for authenticity and genuineness when interviewing documentary ‘talent’, however it is possible to be clear from the outset that language needs to be respectful at all times. Not sure where to begin with this? How about the Diabetes Australia Language Position Statement which actually provides suggestions for inclusive, non-stigmatising language?

I think it is really important to acknowledge that the road to satisfaction in the way we use language that is inclusive and non-stigmatising is a very, very long one. Also, I genuinely don’t believe that there was any malice intended on the part of the film makers or the interviewees.

We also need to acknowledge that the language used in what has been (and many would argue continues to be) a patriarchal health system is entrenched in the thinking of many – it was part of their training and is a habit that will take time to break. But by acknowledging it, we are not saying it is okay.

As I said, I love the idea that diabetes is a topic for a documentary that is being made for a non-diabetes-specific audience. However, if those people walk away thinking that my healthcare condition is a burden to society (and therefore I am too!) or that they believe it is okay to continue to use words that stigmatise, then there is the potential for this work to do more harm than good.

And finally, a call to not only the coordinators and owners of this work, but to all who are developing any sort of health information using any sort of platform: talk to people with the condition. Lots of them. It is not okay to have one token consumer representative; there should be many – as many as (if not more than) any other expert being consulted.

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