Actually, no don’t. 

In a weird, weird situation a couple of weeks ago, I found myself at the end of the phone – my phone – and on the other end was someone who had called to make an appointment with me. They had diabetes. And apparently, I was going to help them ‘fix’ their diabetes and be their new doctor.

Now, there were a few flaws in this premise. Firstly, and perhaps most importantly, I am not a doctor. I am not a health professional of any kind. I do not feel this to be a deficiency in any way, because I am not employed as such. Secondly, I cannot help anyone fix their diabetes because, well, a) diabetes can’t be ‘fixed’ and b) if it could, I’d be starting with my own.

It took me five minutes to convince the person on the other end of the line that I was not who or what they were looking for (seriously, the ‘Huh? You want me to do what?’ which was pretty much the first sentence I uttered should have given away that I was not the sharpest tool in the shed and definitely not the person to be looking towards for diabetes expertise).

When the person didn’t believe that I couldn’t help them ‘fix’ their diabetes, I took a different tact and offered my services in things I could help them with. I offered cupcake recipes, book recommendations, ways to get out of exercising (expert level here!), my opinion on the best film of all time, dinner suggestions.

Once I had convinced the person that I really was not a doctor (but may be able to help them connect with one) I asked why they thought I was.

I see you on Twitter. You seem to know what you are talking about.’

I was reminded again of just how easy it is for people to take on the moniker of ‘expert’ or ‘guru’.

My Twitter feed is, admittedly, predominantly diabetes-related. I link to my blog or live tweet conferences. There are links to journal articles and diabetes events. But none of these suggest that I have anything offer other than the ability to include a link and a brief description of what is at the other end if you click.

But there are also photos of food and recipes and Harry Potter references and links to gigs and movies and other random things. Things that under no circumstances do not give the illusion of me being a diabetes expert.

My new friend and I chatted for a while longer and I mentioned a few things they might want to look into – support groups in the area, online groups and some upcoming events. I let them know they could call me again (for a chat, cupcake recipes, book recommendations etc…anything as long as not medical advice).

I finished the call and opened Twitter, skimming through things I had posted recently. Diabetes expert? Nope. Not at all.

I love being able to quote random diabetes-related numbers to people. I get the irony of this considering I am also of the ‘diabetes is not all about numbers’ school, but sometimes, numbers can be really powerful.

I love asking this question:

‘What does 8754 mean?’

After the blank looks and the stares and the SWAGs, (the number of cupcakes you have eaten? The number of pairs of boots in your closet? The number of litres of coffee you consume in a month??), I reply with the answer:

‘That is the number of hours in a year that a person with diabetes manages their diabetes solo. There are 8760 hours in a year, so it works out to an average of about 6 hours per year that we get to work with a healthcare professional. And that’s if we’re lucky! The rest of the time, we do it on our own.’

It’s pretty powerful when you think about it.

Last week at the ADS ADEA meeting, a diabetes educator asked me if I knew what the number 121 referred to. It was my turn to look blank. (The number of pairs of boots in my closet?…)

‘It’s the average number of diabetes-related decisions a person with diabetes makes every day.’

Now, I am not sure where that stat came from (I actually will follow up and ask her) or just how accurate it is.

But regardless of the exact number, it is high – we do make a lot of diabetes decisions each day.

Over the weekend, I started to think about some of the decisions I make.

I thought about it as I was lying in bed in the morning, deciding whether to get up and get my BGL meter and do a check. I thought about it just before I stepped into the shower and examined my cannula after I removed my pump, deciding if I needed to do a line change then or if it could wait until the afternoon. At a local café, I calculated the number of carbs in my breakfast, deciding whether or not to enter the number into my pump and let the wizard do its calculating magic or just enter the units of insulin manually. But before I did that, I needed to decide whether or not to actually give myself any insulin because I was bordering on being low and didn’t want to bolus too soon in case my food was delayed. I thought about going for a walk with the kidlet and the puppy, deciding whether or not I should set a temporary basal rate in case we went to the park, let Sooty off the lead and had to chase her around for 10 minutes before we caught her. I thought about how much insulin I have in the fridge, deciding that I should call the pharmacy and order some so that I don’t run out when we are in Sweden in two weeks. I decided that I really need to schedule an appointment to have my complications screening done and then decided to wait because… because… well there is no good reason. But that is what I decided.

This was all within 70 minutes of waking up.

I am not sure that I would make 121 diabetes-decisions every day, but there would certainly be a lot.

Trying to explain just how diabetes impacts on our every day is difficult, but using numbers to illustrate just how considerably it weasels its way into pretty much every aspect of the day can be pretty effective.

My study at home is one of my favourite places to work. It’s warm and cosy and filled with things that I love.

If someone who knew nothing about me walked into this room (which would be weird and creepy) they would put together a picture of me as someone who loves New York (thanks to the two meter photo hanging on one wall) and books (thanks to the bookshelves wrapped around two other walls).

They would see that I’ve travelled a bit (thanks to the cluster of photos on another wall of the three of us in places all around the world) and they would see a lot of Apple products.

They would know that I like coffee (frequently here are empty take away coffee caps left on the table) and enjoy cooking (cooking magazines and cookbooks are often on the desk, opened to pages showing the next dish I was planning to make).

They could sit at my desk and look at my pin-board and see reminders of favourite galleries and shops I’ve been in overseas and photos of my beautiful sister and drawings by my daughter and my husband.

And they would discover that we’re pretty lousy at putting the clean washing away because there is often a overflowing basket in the corner, its contents waiting to be folded and put away.

They would be able to get a pretty good picture of me – the person that spends a lot of time in here, frantically typing away on here on my (Apple) laptop.

And if they looked carefully, they may notice something else.

They may notice that I have a lot of books on those shelves about diabetes.

And they would see a half empty bottle of something called Glucolift on my desk, which, if they looked more closely would discover to be glucose tablets. They may even notice the chalky residue around the bottle from last time I was low in here and struggled to open the jar, eventually sending its contents over the desk.

If they looked on the floor and on the desk and on the chairs and inside the empty coffee cups and pretty much everywhere else, they would see little white strips with little drops of dry blood on them.

They would see a jar or two of jelly beans.

They might see a small empty glass bottle with a burgundy lid and burgundy writing that says ‘Humalog’. 

And then, if they noticed all those things and joined the dots, they would realise that as well as being a person who loves books and travels a lot and drinks a lot of coffee and everything else, that I have diabetes.

Or they wouldn’t. They would have no idea. They would miss all those things or not join the dots. And that would be okay. Sometimes, that is really very okay.

POSTSCRIPT:

I’ve spent a considerable amount of time today catching up with #DOCBurnout2015 posts and reading about the tactics people use to avoid or recover from social media burnout. Even more interesting than what I have been reading is watching how people reach out to support and encourage others sharing their story. I guess I shouldn’t be surprised. As someone who has only been afforded love and support from the DOC, it isn’t a surprise that it has been shown with this initiative.

This is a good place to start if you would like to see what people have written about diabetes burnout within the DOC.

DOCBurnout2015My interactions with the DOC have been nothing other than supportive*. I am not sure if it is because I am particularly fortunate or if it is that my opinions and thoughts are so vanilla that no one has ever thought to take objection to them.

I have enjoyed some robust discussion following topics I’ve written about, but I have always found respect directed towards me and hope that I have always displayed respect and kindness in spades. When I have opened up and exposed some pretty raw sentiments, I have felt enveloped in a blanket of love and support.

But having said all of that, there are times that interacting with the diabetes online community is exhausting and I simply feel the need to step away. I get burnt out and tired and need a break. I’d like to point out that it is never personal – my fatigue is never because of a single person.

I also find there to be some symmetry in my need to shrink away online with wanting to go to ground in real life. Sometimes, I don’t want to be ‘out there’. And that is okay.

What I find most draining when it comes to social media is the OUTRAGE (all caps; has to be all caps!). It happens frequently and certainly not exclusively in the diabetes sphere.

OUTRAGE is a modern-day ailment. At the end of last year, online magazine, Slate, compiled this amusing/terrifying/telling/ridiculous (choose your own adjective) piece which told us what we were OUTRAGED about EVERY.SINGLE.DAY of 2014. (August 28 was a watershed day – it was the day that there was OUTRAGE when it was announced that Hello Kitty is not, in fact, a cat.)

In the diabetes world, there is OUTRAGE a lot. In fact, in the first week of January, I wrote this post because we had already kicked off the year with some diabetes outrage thanks to Jamie Oliver and an inflatable Coke can.

I have admit, I am not immune to it. I wrote a post about the whole Crossfit palaver, but it actually was more a commentary on the stupid way that Crossfit dealt with it rather than taking offense to what was said.

The outrage is constant and tiring and often unfortunately results in sad and sorry diabetes-type in-fighting. It gets ugly and instead of building each other up – which is something that the DOC often does so well – we diminish each other and take each other down.

After each of these episodes, the fury and frenzied rage and anger and hate (because there is hate in there and it is terrible), I want to curl up under the doona and step right away from the noise. I reconsider if I really want to be part of a community that turns on each other so quickly at times, adding to the stigma that usually comes from outside our circle.

So when that happens, I spend a couple of days being a little less ‘out there’ and a little more time offline. I give myself space and air and before long, I remember what I get from the community. Support.

And I need that support. I need it for the days that diabetes is too big and scary. I need it for the days that I want to celebrate something about diabetes. I need it for the humour and the sustenance. But mostly, I need it because it makes me feel like I am something bigger than my little diabetes life.

*(There is only one incident where someone took objection to my post about diabetes burnout following a miscarriage, but as that person has made it policy to systematically work through the DOC, insulting as many people as possible, I am completely ignoring and discounting her rude, abusive, disrespectful attack in my DOC experiences. Block, ignore, delete in whichever order you choose, are powerful tools. I have learnt to use them!)

After pounding the corridors of the Adelaide Convention Centre, it was nice to have a quiet weekend of recovery, coffee and sleep.

And I caught up on lots of World Wide Web happenings. Here are some highlights.

LET’S TALK ABOUT COMPLICATIONS.

I am always saying how lucky I feel to have friends with diabetes both online and IRL. I always get a kick out of meeting people in person who I have connected with on social media. Kim Hislop is one of those people. I met Kim for the first time at the ADA conference in Boston this year and then again at Friends for Life in Orlando.

Last week, Kim guest-blogged for Kerri at Six Until Me about living with complications and her post is required reading for anyone affected by diabetes.

Complications are spoken about as an ‘end point’: if you do this/don’t do this, you will get this. Full stop. Threat, threat; blame, blame; guilt, guilt.

Where is the discussion about what happens next? Actually, what DOES happen next?

Kim’s piece starts to answer those questions and open the dialogue. Thank you for writing it, Kim!

NERD ALERT

THERE IS A PERIOD TABLE OF DIABETES!!!! I am too excited to write anything more. (And busy memorising it….)

periodic table of diabetes

(Click on pic for source.)

STICK TO THE FACTS TO COUNTER THE ANTI-VAXX

My heart broke a little last week when one of my favourite artists, cartoonist and poet Michael Leunig, had a cartoon published in The Age newspaper that could only be considered as anti-vaccination propaganda.

I adore Leunig and pretty much all he does – we have a Leunig drawing on our wall and I have barely been able to look at it since I saw the cartoon in the paper.

An article I read today in MJA says that perhaps we need to reframe the way we try to deal with those sprouting anti-vaxx rubbish. The message from this study proposes that instead of shouting about the irrefutable scientific evidence which demonstrates that vaccines are safe we should show parents what vaccine-preventable diseases actually do.

This makes sense. Most people have not seen what diseases such polio or measles actually look like. Thanks to the success of vaccines, most of these infectious diseases are uncommon. Instead of sprouting stats, show pictures

ARTY

I’ve written before about how we love the artwork of Josh ‘SHAG’ Agle and Derek Yaniger. Last week, I was introduced to Cliff Roberts an artist who illustrated the gorgeous (and unfortunately out of print) The First Book of Jazz.

My new project is to find a copy of the book and also some of his prints to adorn our walls.

Cliff roberts

Artwork by the wonderful Cliff Roberts

ICYMI

Last week was the ADS-ADEA annual scientific meeting. Click back through last week’s posts to see what went on. And read Ashley’s take aways from the conference over at Bittersweet Diagnosis.

COUNTDOWN TO WDD

Somehow, tomorrow is September. Which means that we are a mere two and a half months away from World Diabetes Day 2015. The IDF has launched its campaign for WDD this year and you can read all about it here.

The theme this year is all about healthy eating and its importance in diabetes management. Which it is. Even type 1 diabetes. I can already hear the ‘food has nothing to do with type 1 diabetes’ protests, but how about instead we consider how healthy eating is important to healthy living. And that includes those of us with an under-performing pancreas.

Healthy eating is a right – one that is not afforded to everyone. And this is a campaign that is worth supporting.

PRETTY THINGS

Prikkedief is an originations from The Netherlands making some pretty gorgeous diabetes fashion. You’ll find beautiful buttery leather awareness bracelets, pouches to hold diabetes supplies, cheeky t-shirts and fun wall art. Find them on Facebook here. (Their website seemed to be down at the time of writing this.)

Pretty pastels from Prikkedief.

Pretty pastels from Prikkedief.

ONE FOR THE WOMEN AND ONE FOR THE MEN

Diabetes Victoria is holding its annual Women’s Weekend in October. Details are here.

If you are thinking about possibly attending, but are just not sure, I would absolutely urge you to book. The previous two events have been hugely successful with attendees being overwhelmingly going home inspired and armed with new strategies to live well with diabetes.

And men are not forgotten. There is also an event exclusively for men living with type 1 diabetes coming up in  information session coming up in October. Details here.

FUN FACT

The plural of pancreas is pancreata. You are welcome.

It’s nice to be back in Melbourne after three days of running around the Adelaide Convention Centre, unsuccessfully avoiding CHS and giving myself RSI from the constant tweeting and blogging.

There were some terrific things happening at the conference, it was a chance for me to catch up with some people I only see once a year and to hear and see some interesting new things. So here is a quick final wrap up of my ADS ADEA annual meeting.

Highlights

Overwhelmingly, without a doubt, unquestionably the highlight for me was how the consumer voice was heard at the conference. I wrote about it on Wednesday, so ICYMI, here it is. (But I would like to add that yesterday, at the Diabetes in Schools ADEA Symposium, this was taken to expert level with the inclusion of a STUDENT in the session.)

At morning tea on Thursday, the National Diabetes Services Scheme held a launch of some wonderful new resources for people living with diabetes. Details here. The diabetes and pregnancy resources have a special place in my heart, firstly because I am on the Expert Reference Group working on the program, but more so because the Having a Healthy Baby booklet is a revision (of a revision of a revision) of the Can I Have a Healthy Baby booklet? I was involved in developing well over 10 years ago. It’s great to see that there is still so much value in this resource. There’s a new diabetes and pregnancy website. Check it out!

The ‘little purple room’ on the Abbott stand had me giggling each time I saw it. This was where you were taken to hear about the Freestyle Libre. Because the device is yet to receive TGA approval, regulations state that it cannot be spoken about in the public space.

There were definitely more people tweeting! And I was so thrilled to have people who sat in my two social media sessions on Tuesday reaching out once they had joined Twitter.

Helen Edwards’ (Diabetes Counselling Online) presentation at the social media session on Thursday. I have to say, that overall, I felt the session missed the mark, so it was terrific to have Helen as the final presenter providing actual real and practical advice for those in the room wondering how to incorporate SoMe into their practise.

The number of sessions addressing the psychosocial aspects of living with diabetes was significant this year – I thought more than ever more. This is such a huge step forward – in previous years there has been a little focus on it, but not much. I do believe that the increase is largely due to the considerable contribution being made by the Australian Centre for Behavioural Research in Diabetes. Well done to the team there. And it is a pleasure and a privilege to work with you all!

Hanging out with the few consumer advocates who attended the conference. Thanks to Kim, Kelly, Elise, Jane C and Ashley for being so much fun, providing such useful insight, and talking me down from the ledge the couple of times it was looking like I was getting ready to head off on a rant.

Speaking of which…..

Lowlights

Pesky little things seem to get to me at conferences.

It is really disappointing that the ADS ADEA do not have a stronger SoMe presence at the conference. There was not a single tweet sent from their Twitter account for the whole of the week and their Facebook page has been completely inactive since 1 June.

Nowhere at the conference was there a Twitter wall, which can serve many functions. In addition to keeping those wandering around up to date with what people are saying about the conference, it also has the potential to encourage others to get on board and start sharing their thoughts of what is going on and engaging with other attendees and those not in the room too.

And the App for the conference was possibly the biggest waste of time I have ever seen. It was completely unintuitive, difficult to navigate and confusing. The schedule didn’t sync with my diary, so I couldn’t click on a session I wanted to see and have it added to my calendar for the day.

Social media has a place at this, and all conferences. Despite presenting (twice!) on SoMe on Tuesday at the Roche Educator Day, and there being another session which aimed to encourage HCPs to use SoMe, it was really a second-rate and most unsatisfactory attempt by the ADS and ADEA to utilise digital platforms to engage, connect and share.

I watched the launch of the (recently approved for use in Australia) A1c Now product, which is an A1c check that can be done on the spot. The device looks like a BGL meter and it operates in much the same way (strip in, blood on strip, wait, result!) Great idea – and one that has been around for some time in the US. I actually bought one when I was in New York on one of our visits and had a go.

After the launch, I spoke to the rep. ‘Great to see these are finally here now. I’m not a healthcare professional – I have diabetes myself. How do I get one?’ I asked.

‘They are for use by professionals, so through your HCP.’

At that point, I had to check myself, because I know I had that look on my face. I know I had that look on my face because the bloke I was speaking to looked a little scared all of a sudden.

I took a deep breath. ‘I think you are doing that around the wrong way. Why wouldn’t you make these available direct to people with diabetes?’ I waited for the response. I thought I knew what he was going to say. I thought he was going to tell me that it was important people with diabetes had someone speak to them about what the results meant (at which point I would have said that people with diabetes most often KNOW how to interpret the results) or that it was important for people with diabetes have someone tell them what to do with the result (at which point I would have said that a lot of people with diabetes would KNOW what to do with the result.)

But even I was surprised when he said ‘We don’t want to step on HCPs toes.’ I looked at him incredulously. ‘So what you are saying is that even though this technology has the potential to be used incredibly positively by PWD, you are not willing to make that happen because you are afraid of pissing off HCPs? Really?’

Poor guy. I then told him that one of the reasons people with diabetes might not be getting their A1c checked is because they are afraid of being judged or ‘told off’ by their HCP. And that if they were able to get an idea of what the result might be, it would give them some knowledge and perhaps give them a chance to do something about it.

He thought about it for a while and then said, ‘I see what you are saying. Maybe we’re going about this the wrong way.’ Yes. Yes you are.

Overall, for me – both personally and professionally – it was a valuable three days. So, that’s another conference ticked off for the year. Only another three more to go…

Something fun to end the week and help with the celebrating we’ll be doing around here this week after we all kicked some serious goals!

In the program for the ADS-ADEA conference, there was an unfortunate typo in the title for one of yesterday afternoon’s symposia. It took me a moment to realise that ‘Better Understanding the Needs of YOUR People with Diabetes: A Behavioural Perspective’ was meant to be ‘Better Understanding the Needs of YOUNG People with Diabetes: A Behavioural Perspective’.

It was in this symposium that there was a talk that certainly challenged some long-held ideas.

Dr Jessica Browne from the ACBRD gave a talk with the heading ‘Young adults with type 1 and 2 diabetes: more similar than you may think’. When I saw this in the program, I immediately winced. Not because I disagreed with it. But because I knew that there would possibly be some very unhappy people – predominantly people with type 1 diabetes or parents of kids with type 1 diabetes – who would not like what they were reading.

Controversial? Well, actually, I’m not so sure.

I know Jessica’s work, and I have a very clear understanding about what she is saying. And Jess herself took great pains to makes sure that everyone else in the room understood that she is not saying that type 1 and type 2 diabetes are the same conditions. (Bold, underlines, italics for emphasis all mine.)

Jess’ talk was about how emotional and behavioural attitudes to diabetes are very similar in young people – regardless of the type of diabetes.

This makes perfect sense when you think about it. Young adulthood is an often-challenging period of great change. For some, it involves studying or work or a combination of both. Some are planning families and moving out and buying houses and travelling the globe. Some are in relationships, others are not. It’s a time of a lot of self-discovery and finding one’s identity.

And diabetes adds an extra degree of difficulty – whatever type it might be.

Young people with type 2 diabetes face some considerable barriers to good emotional health. Unfortunately, they are often beginning far behind the start line, having to overcome a lot of social stigma and misconceptions about their health condition.

Yet when they search for information to help them out, much of what they find has been developed with an older adult audience in mind. Little of it is relevant to what a 25 year old is going through or addresses the issues they are facing.

In recent times when I have met young adults with type 2 diabetes, the things they say they need to better manage their condition and the how they say they are feeling about diabetes pretty much equal what young people with type 1 diabetes say they need.

Jessica called for tailored healthcare that is intensive, responsive, non-judgemental and targeted for young people with type 2 diabetes, which, when you think about it, is really not that different to what those of us with type 1 diabetes are asking for when it comes to treating ‘our’ diabetes.

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.

Adelaide is sunny and fine and lovely. I am here for the ADS-ADEA conference which officially kicks off tomorrow.

Today, the Roche Educators Day – is a program of practical sessions which, according to the program notes, ‘aims to determine and understand unmet needs in diabetes from the clinician’s perspective.’ The program also promises ‘Experts in the field of diabetes will share to you their clinical experience and knowledge on various topics in relation to diabetes management.’

It is a great program with some incredible experts. And me pretending to know what I am talking about and trying to not be a trouble maker.

The day kicked off with Professor Jane Speight’s plenary session – ‘Adherence and Motivation: Dealing with the elephants in the diabetes consultation’. Jane’s talk was, as expected, full of practical tips. She challenged the people in the room to think about what their expectations are and if they meet the expectations of people with diabetes.

I presented next, delivering an hour long session on ‘Diabetes in a digital world’, where I put a spotlight on how social media can be – and is being – used by people with diabetes and healthcare professionals to connect, support and enhance care. Plus, I used cartoons and cat pictures. Because I was talking about the internet. I will be doing the same talk later this afternoon and I hope the audience is as receptive as this morning’s audience.

I’ve also had a look around the Exhibition Hall and while I will tell anyone who asks that it is because I am interested in the latest and greatest in diabetes management, the real aim for today was to find where the best coffee can be found. Head to the Novo stand, people. The English barista from Sydney has shattered all of my Melbourne-coffee-snob-bias and bangs out a bloody good latte!

Other important priorities for the day included avoiding conference hypo syndrome (failed miserably AFTER mentioning it in my talk), tweeting the bejeezus out of all the sessions (except my own, because although I can multi task like a boss, I’ve not yet learnt how to tweet while giving a talk), and trying to remember that I can’t take photos of…well…pretty much anything.

Looks like it is shaping up to be a great conference. Follow along at home on Twitter: #ADSADEA2015 (and for today’s Roche Educators Day: #RED2015)

Oops. Broke the 'no photographing in sessions' rule.

Oops. Broke the ‘no photographing in sessions’ rule.

DISCLAIMER

I am here as an invited speaker. Roche has covered my travel, accommodation and conference fee costs. There was no arrangement for me to write about the day – I’m just doing it because it’s been very interesting! I am very grateful to Roche for putting a consumer on their speaker panel today. It is terrific to see industry engaging in such a meaningful way.

I’m a bit of a goody-two-shoes most of the time. I like rules; I like to play by them. If someone hands me a policies and procedures handbook, I read it and then tick boxes as I make sure I do what is expected of me. Playing by the book is my MO! (You can see why being diagnosed with diabetes is not really in sync with this philosophy…)

So, it pains me greatly when I see a rule that I don’t like – especially one that I can see no reason to be there!

I am in Adelaide from tomorrow for the Australian Diabetes Society – Australian Diabetes Educators Association annual conference. Actually, tomorrow, I am presenting at the Roche Educators Day which is very exciting and also making me a little nervous. Speaking to healthcare professionals about the benefit of using social media is sometimes a terrifying thought. In fact, the people listening are the definition of a tough audience. (So, if anyone who is attending tomorrow is reading this, please be kind and nice and gentle and open to discussing this topic. Please!)

It has been great that the planners of the conference for the last couple of years have actually bothered to consider how social media can be used to talk about what is going on in the presentations. There was some great tweeting last year – admittedly, mainly people from Diabetes Victoria and the Australian Centre for Behavioural Research, but nonetheless, definitely an improvement on previous years. (So maybe, all the talking to healthcare professionals about social media is starting to pay off??)

This is all great. All heading in the right direction! Social media at our premier diabetes healthcare professional conference is here to stay. So I was really disappointed to see this year that the social media guidelines on the conference website state the following:

The use of photographic, video, or other type of recording devices is strictly prohibited in all oral sessions (i.e., platform, plenary, invited, etc.) and poster sessions at the ADS ADEA 2015 ASM. Therefore, it is also strictly prohibited to post photos/images or video recordings from these sessions on any type of online site, including social media platforms, blogs, personal Web pages, etc.

Now, I recently got into trouble for breaking a similar rule. When I attended the ADA meeting in Boston, I was live tweeting Bill Polonsky’s sessions, and tweeted a couple of his slides*. Within minutes, the SoMe boffins from the ADA sprang into action:

I was firmly rapped over the knuckles. There were a few follow up tweets from DOC peeps obviously as pissed off as me about the policy. We all thought it was pretty crazy.

So let me explain why I don’t like this policy.

I completely understand if there is a restriction around photographing unpublished data. That makes sense. But I believe that the people in the room are smart enough to not take photos of anything if they are told that it is unpublished. They would understand why there was such a restriction and, I believe, not publish the data.

But if the data is in the public domain and available for everyone, then what is the harm?

I live tweet conference sessions because it is a great way to capture what is going on in the moment at the meeting. I am also very aware of what a privilege it is to be in the room! Most people with diabetes don’t get the chance, so this is an opportunity to share what is being discussed.

Of course, I quote what the speaker is saying, or highlight key points, but with a 140 character limit, the value of a picture and its thousand words is never truer!

It also means that there is less chance of me misinterpreting what is being said.

Live tweeting from conferences is a fabulous way to reach a far broader audience – frequently an audience that may never actually be in the room – yet is directly affected by what is being discussed! And I have said it before, but one of the reasons that it is so great to have consumer reps in the room is because we share the information. How many of us actually have HCPs who do that when we see them?

I tweet and blog and talk about them – as do my peers – and that is how we find out what is hot, what is new, what is coming up.

This policy is ridiculous. And it needs to be changed.

*For the record, one of the tweets I sent at ADA was a photo of Dr Gregory House. Dr Polonsky was using a photo of him to illustrate a point. It was a good point. It was a good photo. Plus, I love Hugh Laurie and any chance to look at him. It was worth getting told off for! 

 

 

Read about Renza

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