What a week. It’s been a big one. And here are some words I said to wrap it up…

And here’s some further reading..

All the details of this year’s National Diabetes Week 4Ts campaign.

Beyond Type 1’s DKA campaign.

IDF type 1 symtoms and DKA awareness campaign.

The tragic story of Peter Baldwin’s missed type 1 diabetes diagnosis and how his parents have committed to raising awareness of the signs and symptoms of type 1.

Georgie Peter’s type 1 diagnosis story via her blog Lazy Pancreas.

Thoughtful post from Rachel from Yoga for Diabetes about her diagnosis of LADA. Diabetes is so complex…!

See you in a week or so…I’m taking some time off here to catch up on everything else after the busy week. If you have a couple of spare minutes, please consider endorsing my nomination for this years WEGO Health Awards. Just click on this link – it doesn’t take long at all!

For the last sixteen years, I’ve been directly involved in National Diabetes Week (NDW) in some way. Admittedly, I missed a couple because we decided the middle of July is a good time to go to New York to escape the Melbourne Winter. Two years ago I missed half of NDW because I was in Orlando at FFL – I returned just in time for Kellion! Oh, and there was the year I had a little wee lass who I couldn’t stop looking at and cuddling.

But whichever way you look at it, I’ve been involved in NDW for a while. A lot of that was spent very much on the sidelines, because the campaign was type 2 diabetes focused and I was not. Or rather, my role at work was exclusively directed towards type 1 diabetes activities, and campaigns were always about raising awareness of type 2 diabetes.

This year, for the first time, there is an element of the NDW campaign that is exclusively focused on type 1 diabetes and it was launched today. It’s all about the importance of early diagnosis of type 1 diabetes, aiming to reduce the 600-plus hospital admissions each year because the early signs of type 1 diabetes have been missed. I know so many stories of people with diabetes being told they had a virus/urinary tract infection/were run down/growing pains (in the case of kids)/needed a holiday, and sent home with a prescription for antibiotics. Their type 1 diagnosis only came after ending up, very sick, in emergency, many needing ICU attention.

The campaign highlights the 4Ts of type 1 diabetes – Thirst, Toilet, Tired, Thinner.

We leaked a sneak peek of the campaign on Saturday to let everyone know that it was coming. The leaked video, which tells the diagnosis story of 9-year-old Isabelle, has been viewed by tens of thousands of people.

The response to the video and campaign details has been overwhelmingly positive, with people sharing the video widely amongst their networks. And comments have also been encouraging, telling us that the campaign is right in its tone and focus.

Today, the campaign was officially launched in Brisbane and all materials are now available for you to see and share. Here’s the campaign poster:

What can ­YOU do?

As this is a public awareness campaign, we need to get this information out to people outside the diabetes community. Mostly, those of us affected by diabetes now know the early signs of type 1, but that’s not the case for people who don’t have type 1 or know someone living with it.

You can help by sharing the video on all your social networks. Set your shares to public and encourage your friends to watch and share.

Share the poster – both online and off. You could print off a copies and take them to your GP office, school, supermarket and anywhere else with a community notice board. Ask your church or community group, or child’s school if the poster could be shared in newsletters.

Also, I wrote this piece for Mamamia Women’s Network – again as a way of reaching an audience outside the diabetes world. Please read and share this too.

Use the following hashtags: #ItsAboutTime / #NDW2017 / #4Ts

I have probably attended close to twenty Kellion Victory Medal Award Presentations over the years. You might think that they are all the same and to a degree, you would be right. Every ceremony involves people who have lived with diabetes for 50 or more years being given a medal while their story is shared.

And every single award ceremony has been just that. But the stories are rousing, the people are inspiring and learning about managing diabetes when technology was a glass syringe is sometimes mind-blowing! It doesn’t matter how many of these award ceremonies I attend, the overwhelming feeling of hope steadies and enthuses me for another year.

This year, 56 people were awarded medals, including sixteen 60-year recipients, one 70-year recipient and one 80-year recipient.

One of today’s 50-year medal recipients was Jenny Edge. Jenny frequently comments on Diabetogenic, never afraid to tell me when she thinks I’ve missed the mark; always happy to share her story.


I always love listening to Jenny. She’s very direct, and I always appreciate her no-nonsense attitude. There is no sandwiching how she feels with a couple of innocuous comments on either side of what she really wants to say. She gets to the point and gets there quickly. I find her quite brilliant!

Jenny was diagnosed as a young child, and today she told me how she really hated needles at first. ‘I thought they were cow needles,’ she said. ‘And then my dad showed me what cow needles really looked like – we lived on a farm. Suddenly, my insulin needles didn’t seem so scary.’

Although she received a 50-year medal today, Jenny has actually lived with diabetes for 55 years, so she’s only five years from receiving her 60-year medal. I hope to be there for that one too! Congratulations, Jenny!

There’s a type of low I have.

It’s usually the middle of the night. I’m alerted to something not being quite right – this time, my iPhone beeped. This time I caught it before it became a complete white out hypo that I’ve no real memory of the next day. I switched into autopilot and started to do what I needed to do. I don’t know how it happens; it’s as though I am watching from above, telling myself what to do.

Renza, sit upright.

Renza, grab your meter.

Renza, there are no strips remaining in the canister.

Renza, get out of bed and walk to the diabetes cabinet and get new box of strips.

Renza, check blood glucose.

Renza, grab juice box from bedside table.

Renza, stab straw into juice box and drink, drink, drink.

Renza, go to kitchen.

Renza, cut slice of bread from sourdough loaf on kitchen counter.

Renza, slather bread with Nutella.

Renza, sit at kitchen table.

Renza, eat.

I was methodical, my movements slow and deliberate, almost robotic, like Hymie from Get Smart. I could almost feel my brain actually engaging with each body part, telling me what to do: walk, reach, drink, eat, chew.

I don’t know how long I sat at the kitchen table. I remember starting to focus on the pale light in the back garden and the shadowy figures the huge tree from over the back lane making. I heard Cherry the cat meow quietly at one point.

Renza, go back to bed.

I climbed back into bed, Aaron stirred. ‘Are you okay?

‘Hypo. One of those that I often don’t remember. You know – where you would be forcing me to drink pineapple juice and I’d have no memory of it…?

I stopped for a minute and realised I was cold but still needed to order my body parts to do what I wanted:

Renza, use your arms to cover your body with the doona.

I started shivering as I realized my hair and t-shirt were damp. I was tired, but couldn’t sleep. My overactive brain that had been busily directing my body, telling it what to do, wasn’t ready to shut down just yet. It was on high alert, and as often happens in that post-hypo murkiness, with the power to shut down the negativity completely deficient, all the scary thoughts started flying around. I thought about what could have happened; I thought about the times that the lows invaded everything and I couldn’t function at all, not remembering the spent juice boxes, empty wrappers, crumbs in the bed. The fear and darkness of hypoglycaemia threatened to overtake me and I knew that sleep that night would be lost forever unless I acted.

Renza…close your eyes.

Renza…don’t have another low…

Renza…get some sleep…

Max and Hymie

My A1c came back a few weeks ago in my target range. As soon as I saw the number, I said to my endo: ‘It’s because of this,’ and I gently patted my arm where my Dexcom was sitting firmly, doing its thing.

I was right. Wearing CGM fulltime has allowed me to understand better what is going on with my glucose levels and how it responds to a variety of different factors.

Puppy on my lap and CGM on my arm.

But it’s only part of the picture and the more I’ve thought about it, the more I’ve come to realise it. I’ve been using CGM almost fulltime for four years now, yet this A1c was ‘more’ in-range than any other in that time.

It can’t just be the device.

No, it’s when I add the low(er) carb way I’ve been eating to the equation that the improvement starts to make sense.

The most obvious thing I noticed when I started eating lower carb was that my CGM trace stayed far straighter for far more of the time.

Before I started eating this way, I’d see a lot of spikes. Sure, I’d come back into range after an hour or two, but there was a good while there that I was above range while I waited for the insulin to do its thing with the carbs I’d just ingested. Insulin isn’t perfect; its action can be unpredictable.

Eating lower carb means the spikes just don’t happen as they used to. Of course there are other contributing factors that do cause my glucose levels to head out of range, but by eliminating – or rather minimising – the one that is most responsible has resulted in a significant change.

So, what is that change? It’s all about time in range (TIR).

And that is how I now measure my glucose management. It’s not about A1c – I don’t like averages because the conceal a lot of what is going on. The A1c average might be a pretty number, but what is going on outside that number to get there?  But when I look at how much of the day is spent in range, there is less place to hide. It is starkly clear the days that I am within my upper and lower limits.

And there is a flow on effect from more time in range. When I think about how I feel on the days that I am far more in range than out, I feel better – more energised, more focused, more able to just get things done.

CGM data easily provides me with this data (and flash glucose monitoring would as well) so I can see at a glance just how much of each day is actually spent in my target range. This means that I don’t really care about what my A1c is. It may creep up a little bit, but if overall I am spending more time in range, then I’m happy.

This is just another reason that A1c measurements are flawed. It was first recommended as a way to measure diabetes management back in 1976 and a lot has happened in diabetes since then. I’m certainly not suggesting that we throw it out the window. But I am saying that with new (and some not-so-new) tools to provide even more information – more meaningful information – I certainly am not using it as the only way I to track and measure how I am going.

TIR. I’m calling it the new A1c! (And adding yet another acronym to my diabetes lexicon…)

Want more? This great piece about ‘going beyond A1C’ from diaTribe is a must read.

I’m a little cranky this week. At least, that’s how it may seem with some of the ways I’ve been responding to things I’ve seen online.

Yesterday, mice were cured again which was awesome and wonderful if I were a mouse, as suggested in the photo to the right.

Alas, I am not, so I felt the way I usually do when I hear of diabetes disappearing in rodents – ambivalent, as I crabbily pointed out to anyone who would listen. (It was quite timely when this article came across my radar which did a good job explaining how mice and humans are different and therefore what works for a mouse may not work for a Renza…or any other human.)

And then there was Monday’s post about the Twitter discussion about how much power and influence healthcare users have in the healthcare system (spoiler alert: the answer is very, very little…).

But today, I’m writing about an ongoing Twitter discussion that has me shaking my head for different reasons.

I wasn’t around the diabetes world when home blood glucose monitors came onto the market. I was handed a meter the day I was diagnosed in 1998, and I was able to take myself off to an NDSS outlet and pick up strips. Blood glucose monitoring was expected then, and I was easily able to access what I needed to meet the recommended glucose monitoring treatment I was prescribed. I remember being told just how essential it was that I prick my finger and check my glucose levels before meals and before bed – at least. This was the technology that was readily and affordably available to people in Australia and healthcare professionals were very, very in favour of using it.

But it wasn’t always the case.

In the early 1980s, home blood glucose meters started being offered to people with diabetes to take home and use. It was the start of self-monitoring blood glucose (SMBG) – before this, it was all about weeing on a stick and analysing colours. The advent of SMBG is certainly one of those moments on the diabetes timeline that stands out as an important step in diabetes management and improved care.

At the time, there was a lot of criticism of this new-fangled device, with many HCPs believing that it wouldn’t take off, the expense was needless and that there was not enough evidence to support the ongoing subsidisation of such technology. According to a short reflection piece to BMJ in May 1998, the introduction of SMBG had clinicians believing home glucose monitoring ‘a dangerous practice’.

As insulin pumps became more popular, the same attitudes were emerging and in 2001, when I decided I wanted to start on a pump, I had to doctor shop before I could find an endo who would agree to filling out the necessary paperwork. The reasons for refusing my request ranged from ‘You’ve not had diabetes long enough yet,’ (I started on a pump almost three years after diagnosis) to ‘They’re not safe’, and ‘There’s no evidence a pump will improve your A1c’, to which I replied ‘Okay – but will it let me sleep in on a Saturday morning and present more flexible food timings and options? Because my quality of life is seriously impacted on having to freedom to live my life because of the restrictions my current diabetes treatment regimen demands and I am becoming burnout and resentful of it right now.’

I wish I could say that these ideas ceased when I started on a pump, but we still hear today people being refused pump therapy for a litany of reasons that, quite frankly, don’t hold water in most cases.

And then, the arrival of CGM was met with exactly the same reaction. ‘It will make people obsessive,’ and ‘there’s no evidence to suggest that it actually improves clinical outcomes and A1c’ and ‘It’s a gimmick – we have blood glucose monitoring that works just fine,

This, despite a recent talk I attended at ADA where endocrinologist, Steve Edelman from TYOCD declared:

Which brings us to the the Twitter discussion this week which centred around FreeStyle Libre and concerns that there is not enough evidence to warrant subsidy of the product in the UK (following a report on the device from NICE in the UK). Arguments shared in 140 characters or fewer very much centred on the lack of evidence about the Libre.

I understand the arguments: clinicians were calling for randomised control trials (RCTs) to provide the evidence they feel comfortable with before they are willing to recommend a product: they want evidence to support clinical outcomes (i.e. lower A1c).

The problem here is that RCTs are costly, take a lot of time and often don’t measure anything more than clinical outcomes. Plus, they are rarely, if ever, co-designed by the people impacted by whatever is being studied.

It was the same sentiments as when other new tech was released into the market. Often it’s new diabetes tech that provides the user with more information, more data….and more control over how and what they are doing to manage their diabetes.

The pattern repeats itself each time there is something new: clinicians are wary (which, it could be argued is their role), people with diabetes are excited. In the case of Libre, I know of many people who, after years of refusing to measure their blood glucose due to pain and intrusion, have started actively monitoring their glucose and making meaningful treatment decisions due to the ease of Libre. One woman said that it has meant that for the first time in over a decade she feels she actually has some idea of what is going on with her glucose levels which has resulted in her making smarted food choices.

As I read the tweets, I started experiencing very strong feelings of déjà vu. And I also was once again reminded of why so many subscribe to the #WeAreNotWaiting movement. And I ask: Is it any wonder that people are hacking diabetes devices and building their own systems to do what we want them to – what they are capable of doing – now?

P.S. Just a reminder that there is currently a stakeholder engagement underway following a submission to list FreeStyle Libre on the NDSS. You can read all about it here (where you’ll also find the link to take you to the survey).

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.

If you can, think back to when you were diagnosed with diabetes. Can you remember much of it?

I can. I can remember almost every word that the endo, diabetes educator and dietitian said to me. I can remember that, in amongst the explanations of what diabetes was all about and how it would impact on my life, there were thinly-veiled threats about what would happen if I strayed from the plan I was being given with the expectation that I would follow it. I remember the rigid ‘my-way-or-the-highway’ instructions about how life with diabetes would be.

But mostly, I remember what was missing. There was no mention about the impact of diabetes on my emotional wellbeing. No one suggested that speaking with peers – others living with diabetes – might provide me with some much need comfort or camaraderie. No one hinted that I might like to do some of my own reading and investigating to come up with my own ideas of how to best manage this chronic condition that had moved into my body, my mind, my life.

No one told me there were options or suggested that I needed to carve out my own path and then work out to navigate it best.

If only I’d had a guide to help me do that – something to give me some ideas that felt more in line with how I lived before diabetes. I wanted something that shared real-life experience about how to make diabetes fit into an already really busy life, and help me be conscious of making healthier choices, but choices that didn’t feel as though they were suffocating me.

Now I have it – albeit 19 years too late!

Adam Brown from diaTribe has written Bright Spot and Landmines which he has sub-headed ‘The Diabetes Guide I Wish Someone Had Handed Me’. 

Click on link to be taken to the first chapter.

As I read this book, I started to think about how different those early diabetes years would have been for me – the years before I found my voice, my people and an ability to work out my own way with diabetes.

I could use words such as ‘sensible’ and ‘practical’ and ‘level-headed’ to describe the advice gently doled out in Adam’s book, and they would all be accurate.

But they would be underselling the value of the book.

Adam highlights the landmines – the things we all do to take short cuts – that inevitably negatively affect our diabetes. Often we think these short cuts save us time or ‘fix’ a diabetes problem quickly, only to find that they often turn out to be time consuming and actually end up causing more problems than the original one we were trying to address.

The bright spots are suggestions on how to positively and sustainably live with diabetes. They are easy to manage, and don’t ask for a significant shift in thinking, or large financial or even time investment to make the changes.

The book is segmented into four sections: Food, Exercise, Mindset and Sleep. This makes it super easy to use as a reference book and dive into it to help target specific areas that you want to think about. I’ve read the whole book through twice now, but keep going back to the sleep section, because I realised that it is an area of my life that I really need to address now.

I honestly wish that the day I’d been diagnosed with diabetes I’d been handed this book. I wish I’d had it on my shelf all those years as a resource to refer back to in moments of burnout or no motivation, or when I needed a little push to encourage me. I wish I’d been able to tap into Adam’s wisdom on specific issues when I was struggling with being in a food rut that was affecting my glucose levels, or in a funk because my mind was not clear or focused.

I’m so glad to have it now and have already made some changes which have been very positive. It might be 19 years late to the party, but this book will be on my shelf to be pulled down very, very often.

It doesn’t matter how long you’ve had diabetes; you WILL get something out of Adam’s book. But if you or a loved one is newly diagnosed, I would recommend you stopping whatever you are doing RIGHT NOW and getting a copy. You can buy a paperback copy here, or download the PDF here, naming your own price.

If you would like to win a copy of Bright Spots and Landmines, I can hook you up! Adam generously provided me with some copies when I caught up with him recently at ADA. Just click here and tell me in 25 words or fewer why you would like to win a copy of Bright Spots and Landmines. But chop chop! You’ve only got until the end of the weekend to enter. 

One of my bookmarked pages is this:

This is a public page and lists all open consultations from the Australian Government Department of Health.

I know. I live the exciting life.

I have it marked and check the page regularly to see if there are any consultations that are of interest to me and on which I would like to comment. The consultations I respond to are not necessarily diabetes-related, but then, my health is not always diabetes-related…

At the moment, however, there is a very diabetes-related consultation underway and I would encourage anyone affected by diabetes to take a few moments to fill in the survey.

The Department of Health is currently evaluating the FreeStyle Libre, specifically to consider whether it is suitable for subsidisation under the NDSS. (The consultation is happening following a submission to the Department for subsidisation of the product.)

An Assessment Panel will be set up to consider the submission, but before they meet, the Department is seeking comments from consumers and other stakeholders about the product.

You can take part by completely a very short survey. You need to provide some personal details (name, address, phone number and email address). There is one comment box for thoughts for the Assessment Panel to consider. You are asked to think about how diabetes impacts your quality of life; if you’ve used the Freestyle Libre, did it improve your diabetes management; what are your personal experience of using the device and any benefits or negative affects you may have noted; If you’ve not used the device, what would you expect it to do if you did. You are also asked to write about other devices and tools you use to manage diabetes and think about how they benefit your management.

Some things to consider when filling in the consultation survey:

  • Be honest about your experiences. You don’t have to have used the Libre to complete the survey. This is for anyone who is affected by diabetes and would like to weigh in on whether or not they believe the product should be subsidised.
  • Stay on topic! This is about Freestyle Libre, so it’s not really the time to say that you want a fully-funded artificial pancreas delivered to your door now please. (And just further to that, it’s not the time to lobby for the expansion of the NDSS CGM Initiative. Comments that are not relevant to the issue at hand usually get ignored. Stay.On.Topic.)
  • Try to use really clear language and don’t assume the person reading what you have written knows a great deal about diabetes. It’s likely that the Assessment Panel will include people who do know a great deal about diabetes, but the people from the Department conducting the initial consultation may not. So, don’t use abbreviations and acronyms, or jargon and diabetes slang.
  • This is the opportunity for people with diabetes to have their say. Health professionals are also invited to participate in the consultation, but obviously, their perspective is going to be very different to someone who is actually wearing the device to help manage their diabetes. What you have to say can’t be found in glossy brochures or opinions of those working with diabetes. Use the opportunity to really share your thoughts.
  • So, your experience about actually wearing the device, the accuracy of it, how it has changed your diabetes management (if at all), why you do or don’t like it, the devices convenience (or lack thereof), the best and worst aspects of it are really, really valuable.

The consultation is open until 17 July and can be accessed via this link. Please share with anyone you think may be interested.

DISCLOSURES

None! I’m sharing this information because I know a lot of people who are interested in this device and because many are frustrated at how expensive it is. 

A lot has already been written about the photo ban at ADA last week. For the first couple of days of the meeting, the first topic of conversation I had with everyone I met was not about what I’d seen or learnt. It was about the photo ban and the ADA’s failure to appropriate deal with the complaints. It was a debacle, an absolute shit storm that could have been addressed in many ways to make it better.

Firstly, it’s worth noting this is not new. Two years ago, I was swiftly reprimanded for tweeting a photo during one of Bill Polonsky’s talks. The ADA bot who was monitoring any flouting of the no photo rules quickly responded to anyone sharing photos on twitter or other social media platforms. The message was strong: stop doing this or your credentials will be revoked. For the record, this was the photo that got me in trouble:

Yes – that photo of Dr House straight from the Internet was the reason that removal of my press credentials was threatened.

This year, execution of the archaic policy was increased to expert level. And people were not happy.

Many were asking why the ADA was being so strident in their enforcement of the policy or, more importantly, why the policy was there in the first place. But it’s not just the ADA. Taking photos or videos during sessions or of posters is banned at the IDF’s WDC, EASD meeting and here in Australia at the ADS-ADEA meeting. (How’s that for a sentence of alphabet soup?)

However, I have never known it to be enforced the way it was last week with a multifaceted approach of vigilant soldiers in red approaching anyone daring to photograph a slide during talks or in the Poster Hall, as well as social media (mostly Twitter) responses being fired left right and centre to anyone who then tweeted a photo.

The ridiculous thing is that anyone at the conference could tweet WORD FOR WORD what the speaker was saying (provided they are a speed Tweeter), but just couldn’t take a photo of the slides. And to be honest, a lot of the speakers were pretty much reciting WORD FOR WORD what was on the slide, so it was possible to pretty much tweet out every single thing being presented. (Also, that makes for a really boring presentation. Don’t do that!)

Suddenly, the story of #2017ADA was not new diabetes research or technology or treatment. In fact, the story wasn’t diabetes at all; it was how pissed off people were at the ridiculous ban.

People trying to follow along from home felt excluded and annoyed. Attendees of the conference felt frustrated that we couldn’t share what we were seeing with those not in the room. As is often the case at these meetings, there were two or three or more concurrent sessions I wanted to attend, but as I’m yet to learn how to be in more than one place at the one time, rely on people in the sessions I’m not at to share what they are seeing and hearing.

And me? I was irritated and exasperated at how difficult it was to follow the #2017ADA Twitter feed because of all the bloody criticism of the photo ban. (And just delicately, those people who commented on EVERY SINGLE TWEET about the ban, you were not helping. You were making it harder.)

I understand that I am very fortunate to attend diabetes conferences both here and overseas and I am conscious that not many people with diabetes are sitting in the audience. I also know – from personal experience as well as anecdotally – the people in the audience are not always the best sharers. When they return from conferences, they don’t sit with people with diabetes to share what they have learnt.

So, as a person with diabetes who likes to share and communicate, I think it’s my responsibility to share as much as I possibly can about what those of us with a registration or press badge are seeing and hearing.

Trying to stop the flow of communication in digital times is ridiculous and it demonstrates an appalling lack of understanding about harnessing digital platforms’ reach to educate, inform and support not only people with diabetes, but also healthcare professionals. It was also ludicrously naïve of the organisation to think that there would not be backlash and that they would get off without condemnation.

The control of information is really not possible in this day and age. A conference about diabetes should not be shut off from people with diabetes, and if the only way ‘in’ for most people is online, then that avenue should be thrown open as broadly as possible.

In two months’ time, the ADS ADEA conference will be in Perth, bringing together diabetes healthcare professionals from across Australia. It is our largest meeting. Currently, on the meeting website, there is this warning in their social media guidelines:

I am calling on the organisers of the ADS-ADEA conference to change this policy immediately, instead, encouraging the sharing of information far and wide. Consider those who cannot afford the time or fee to be at the conference, yet would benefit significantly from learning what is going on. Embrace social media as a way to extend reach from the few thousand attendees (or few hundred in any one session) to a far larger audience. And welcome all diabetes stakeholders to be part of the discussion online.

Just think how much better #2017ADA could have been if that had been the story.

Some excellent commentary on the photo ban at ADA.

Medscape’s piece written while the meeting was happening. 

The always thoughtful Marie Ennis O’Connor’s piece for Medium

And this from Medpage Today

 

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Twitter Updates

Archives

%d bloggers like this: