You are currently browsing the category archive for the ‘Conferences’ category.

I’m still getting my head around the #HealtheVoicesAU conference – there was so much that happened over the event that it’s taking time to write about it all and really nut out what I took away from each session. (Previous posts here and here.)

When I looked at the program, I was probably most excited to hear from Nick Bowditch. I knew nothing about Nick other than what the program told us: He is the only person in Asia Pacific to have worked at Facebook and Twitter; he’s an entrepreneur who helps small businesses here and across the globe shape their online presence. And his personal health story is that Nick is a mental health advocate as someone who has lived with depression for many years.

I knew Nick’s talk would have lots to offer, and title of his talk that had me excited: ‘The Art of Storytelling’.

I’ve written before about why I love story tellers and story-telling. And telling my own story. It’s reading and hearing the stories of others with diabetes that helps put in context my own experiences. Others’ perspectives shape my own and I learn so much from how others deal with the clusterfuck that diabetes can be.

The first slide Nick showed us was of the wonderful Jamaa el-Fna in Marrakech. He told us how he spent an evening captivated in the square. There amongst the snake charmers and the men walking around with monkeys on leads and the little girls selling tissues and the vendors hawking fresh orange juice, were story tellers. And although he couldn’t understand a word they were saying, he was enthralled as they animatedly told their stories.

That’s the beauty and magic of a good story teller – you don’t necessarily need to understand the detail; just getting the gist of the tale is enough.

And then, Nick gave us the snapshot of his story. In a nutshell, he told us this:

Slide from @NickBowditch

It’s easy to make assumptions and think that you know what Nick might be living with if you see that list. But you’d probably be wrong. I know I certainly was. My initial ideas of what life must be like for Nick were turned on their heads as he put into context what each of the above aspects of his life actually means to him:

Slide from @NickBowditch

By turning our assumptions on their head and reframing how he lives with mental health conditions shows us that Nick is not ‘just coping’, he’s living. His words were: ‘These are not my defects. These are my superpowers.’ And it challenges us to reconsider our preconceived ideas. I know that those of us who speak about diabetes often challenge what others think.

The image of T1D being all about kids and needles and blood is not really what it’s about for me. And the far-too-easy idea that T2D is all about older, overweight, inactive people is wrong too.

When we tell our stories – and reframe the narrative – the truth comes out.

Possibly the most powerful thing Nick said was this: ‘Telling the truth is not brave. It’s easy. The hard thing is not being authentic.’ We’d come full circle back to the first speaker of the day who implored us to find authenticity in what we were saying. And it reminded me of why I have always been an advocate of having people with diabetes sharing their stories in any forum where people are talking diabetes: the legitimacy of lived experience cannot be found in any other way than actually having someone tell their story.

I see first-hand the power that having a person with a health condition stand alongside a healthcare professional and put into context the theory and research that they have just presented.

There is an art to storytelling. We do it every day that we tell our story. We do it every time we put words on a page for a blog post, or in a diary or in a letter, ot when we stand up and tell it like it is. Some do it far more elegantly and eloquently, but the things is; it doesn’t matter. As long as we’re authentic.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

I’m a sucker for a man with a beard. So when Jimmy Niggles was introduced as the second speaker at last weekend’s HealtheVoicesAU conference, I snapped to attention to hear what he had to say.


Jimmy Niggles (not his real name) started Beard Season at the wake of his 26-year-old mate, Wes, who died of melanoma. Each year, 46,000 people lose their life to melanoma making it one of the most lethal cancers globally.

Jimmy wanted to do something to encourage people to have regular skin checks, because (as is often the case) early detection of melanoma is critical to survival. The idea was for blokes to grow a beard in Winter (apparently the season for beards!) and then use their hirsuteness to start a conversation and challenge their friends and family to have a skin check.

One of the great things about this charity is that any bloke can become an ambassador. Grow a beard. Start a conversation. Encourage people to have a skin check. It’s simple, scalable and easily translatable. (And there is something on their website here about how women can get involved too.)

Jimmy is a reluctant advocate in some ways. He says he made himself an expert speaker by starting with one on one conversations, with the belief that every conversation can make a difference. That grass roots approach has grown to him (and his beard) being the face and voice of Beard Season and he has really kicked some major goals!

It was easy to draw parallels between what Jimmy is doing with Beard Season and how it could be adopted for diabetes awareness – both in terms of screening for type 2 diabetes and also complications screening. Those conversations at an individual level have so much potential, and tied together with public health campaigns and media promotions, there is an opportunity to reach lots of people.

Jimmy’s beard is there permanently for now and will be until someone offers him a cool million bucks to shave it off. He’s open to offers, so if you have a spare million under the mattress or in the freezer, he’ll put it to good use.

Want to do something to support Beard Season RIGHT NOW? Check out these beyond fabulous playing cards with some incredibly impressive beards. Be still my beating heart! Each deck of cards contains a lucky card. The idea is that you read the card, do as it says and spread the word. It’s another simple and effective way of getting the word out.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

 

Last Friday, I flew to Sydney to take part in the first Australia HealtheVoices Conference coordinated and run by Janssen (disclosure at the end of this post).

I’d followed along the US versions of this event, which have been running now for a couple of years, always with diabetes health advocates attending. So I was thrilled when I received an invitation to take part.

The event was run on Saturday with a dinner on Friday evening featuring Turia Pitt as the keynote speaker. I’m going to write something about that another time. Today I want to focus on some of the actual conference. This is just the first post – the rest will come over the next week or so.

I was extraordinarily excited about being in a room with advocates from outside the diabetes space. (But also pleased for the safety of the diabetes advocate bubble! We were well represented – four of us seated at the same table, occasionally nodding at each other as we recognised the stories others were sharing, even if their health condition was different to the one we navigate.)

Anytime I am surrounded by health advocates (diabetes and other) I have a weird contraction of feelings: surprise and absolute no surprise. Surprise that experiences are so similar and yet absolutely no surprise that our experiences are different! I read this article from the SMH (written as a follow up to the event) and so much resonated about Luke Escombe’s story, despite his peers not living with diabetes.

The speakers at the conference were diverse and covered a lot of different issues. And holding it all together was journalist and TV presenter Shelly Horton, whose fabulousness I cannot even start to describe! As well as making sure everything ran to time, Shelly shared stories of her own health experiences of living with PCOS.

HealtheVoices emcee, Shelly Horton, hamming it up with some diabetes advocates.

We started with Samantha Jockel from Aldi Mum. She was a terrific speaker, however I found that not everything she said sat easily with me, mostly because at times I struggled to see the parallels between what I do (write a rambling little blog about about my own experiences of my health condition) and what Sam is doing (building a community which generates income).

I also realised I’m a crap blogger! As Sam eschewed the benefits of knowing your analytics and stats – she is an analytics ninja! – I realised that I rarely if ever look at the stats on my blog or other social accounts. Facebook sends me a weekly roundup and I categorically ignore the email; Twitter wants me to check the activity of different tweets, but I don’t; Facebook also tells me when I a post is doing better than usual and I get annoyed at the alert thinking that it was someone posting a cute cat meme: LinkedIn tells me how many people are looking at my profile, urging me to go and see who they are, but I’m seldom interested.

I know these are tools that can help me grow my audience and build my following, but I still have this idea that the only people reading are my mum and the guy from Romania who used to message me every day. (Perhaps if I looked at my stats, I’d know that’s not the case…)

Sam also spoke about boosting posts and ‘throwing some money’ at them if they could do better. I’ve never spent a cent on promotion of my blog and can’t see that I ever will. Once I hit publish and share what I have written on my social feeds, I don’t do anything any further. Occasionally I repost the link on Twitter, but only when I remember that there are people living in different hemispheres and were probably asleep when I posted it the first time so may have not seen it.

I guess the difference for me personally is this: My blog is not my job. I make no money from it and I have no intention of it ever becoming a money maker for me. I have a job – this is not it, despite the significant time and energy I spend writing. I blog for very selfish reasons – to find my tribe!

But there was much that did resonate with Sam’s talk and the overarching message that I took away was this: be authentic. As she spoke about the importance of finding our own voice online, she kept coming back to the need to be relatable, honest and real.

That did make sense to me, because I know that the only reason that I write is to tell my story about living with diabetes – the good, the bad, the ugly, the real.  I know that when I read about people living with diabetes, I want to read the genuine experience. The blogs I read – and keep going back to – are the ones that are undoubtedly honest and authentic.  Real life. Real stories. Real people.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

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, I spent three and a half days in Paris at the Advanced Technologies and Treatments for Diabetes (ATTD) international conference. It was the 10th ATTD meeting, and the first that I had attended. I have been to my fair share of diabetes conferences both here and around the world, but this one was definitely different. The narrow focus on technology meant that most of the attendees shared an affinity for tech-geekiness.

I was there as part of the Roche Blogger Networking #DiabetesMeetup event, (my disclosures are at the end of this post), which was a remarkable day with about 40 bloggers from across Europe. Lots more about that in coming days.

As I sat in sessions and wandered around the exhibition hall, I found myself becoming increasingly uncomfortable. The combination of being enthused, enthralled and excited (alliteration!!) at new tech and treatment advances sat trickily alongside nagging and constant reflection about the categorically un-level playing field that is diabetes around the world.

How could I happily be sitting there, hearing about automated insulin delivery devices, the value of CGM use, implantable CGM sensors that last for 90 days and big data when I had just spent weeks imploring people to donate to Spare a Rose, Save a Child? I am an ambassador for Insulin for Life Global and despair at the thought that people are dying because they can’t access insulin. And even in first world countries, access to insulin is, for some, not a given, and the thought of accessing the sorts of technologies I was hearing about may as well be a fairy-tale.

The divide between those of us in the room – those able to use the technology – and those for whom access to any sort of diabetes tech was gaping and seems to be getting bigger by the minute.

Fabulous Professor Alicia Jenkins with Annie Astle and me.

Fabulous Professor Alicia Jenkins with Annie Astle and me.

I walked out of a brilliant session about automated clinical decision support systems. It was morning tea time, so there was a break in sessions and I thought I’d find a quiet corner to try to get my head straight about how I was feeling. I looked up and there was Professor Alicia Jenkins. I knew that she was just the person to help me sort myself out!

Alicia is an Australian endocrinologist. She is a remarkable clinician, researcher and one of the best presenters on diabetes I have ever heard. Plus, she is a lovely, lovely person. Alicia is also the President of Insulin for Life Global.

I mentioned to her how uneasy I was feeling and she agreed, but with typical (and welcome) Alicia reflection, she helped me find some perspective. She reminded me that most people at the conference are very conscious of the divide, and that even while talking about the latest advances, there was still a lot of talk about access and reimbursement. There was acknowledgement that the divide is real and needs to be addressed. I looked at her – someone who is such a huge advocate for, and expert in, technology and new treatments – and realised that, actually, we can be across both aspects of diabetes care; that just because we are excited about the latest (and expensive) technologies doesn’t mean we don’t care and want to do something to help improve access of basic diabetes supplies.

By the end of the conference, on the very long trip home, I kept thinking back to our conversation. I realised that as much as it would make things simpler, I just can’t compartmentalise my own diabetes situation and how I feel about access for others. I struggle with this, because one of the really important things for me to have done all the time I’ve worked in the diabetes space has been to separate my own experience from others’.

But in this instance I can’t just leave it at ‘this is my experience and this is someone else’s’ and I think that may actually be a positive. I do find it uncomfortable. I feel guilty that I can afford and access whatever I need when so many cannot. I feel it in Australia amongst my peers and I feel it when I read about those in other countries. (Really, you should read the brilliant profiles T1 International are sharing at the moment, which give a beautifully (and sometimes harsh) personal perspective to access issues.)

I struggle with my privilege and have a constant feeling that I am not doing enough. But these feelings are a good thing. Because I can always do more. I SHOULD always do more.

I will never stop writing about these issues here and elsewhere, or talking about them. I will keep putting my money where my mouth is, because words are not enough. And I will keep advocating, using my voice and working with people trying to make a difference, until there is no difference at all between what we can all access.

Because it’s still February, I would like to urge you again to please, if you can, make a donation to the Spare a Rose campaign. For the cost of one rose (about AUD$6), you can provide insulin for a month to a child in a developing country. (Also, I should mention that last week, I was invited to join the Spare a Rose, Save a Child team; an invitation I accepted immediately.)

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.

15327315_10154763151845789_470477467457476464_n

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.

A couple of weeks ago now, I was incredibly fortunate to win a scholarship to attend the Mayo Clinic’s Healthcare and Social Media Summit in Melbourne. I’m a little slow in getting anything out about it, because…well because November. But November is over! And finally, the first of the few posts I’ve started is here and the others are coming. #Tardy

Five scholarships were offered for consumers to attend, and I was encouraged to apply. So, I diligently filled in my application, hitting ‘submit’ moments before the deadline. (Not to self – always have an up-to-date bio available!) And then, the week before the conference, I squealed aloud in a meeting when I received the email, letting me know my application was successful.

The scholarship recipients. (Click photo for source.)

Before the event even started, there was online chatter about making sure the consumer reps in the room connected. Which we did! Before and throughout the conference, calls to ‘find your tribe’ resonated, and I certainly felt I had found mine! It was an absolute delight to meet and an honour to wave the consumer flag alongside Carly, Mel, Liat and Belinda.

And others in the tribe made me realise just how high the bar is set! Lisa Ramshaw, event organiser, is a force of nature. There is no other word for her enthusiasm and dedication to healthcare social media. I suspect Melissa Cadzow has #patientsincluded tattooed on her body somewhere so great is her commitment to the inclusion of consumers in all activities that affect us!

Kim giving her talk

And of course, the five-minute presentation in the innovation showcase from Kim Henshaw about OzDOC presented another strong consumer voice to the event. Kim spoke about how healthcare professionals use the weekly tweetchat as a platform to learn and engage with consumers. Kim did the OzDOC community proud with her talk, using her time to accurately crystalise the very essence of the power and influence of an online network.

It’s these people that are the reason I love these sorts of conferences – and their like-minded attitude, and endless promotion of the importance of the consumer voice and the value of using social to connect, inform and support. This is mostly a huge positive, but it does get me thinking that the people who should also be in the room probably aren’t. Organisation CEOs need to be better represented to be taken on the journey of why HCSM cannot be dismissed as ‘the way of the future, so we’ll get to it soon’, but rather ‘It’s here. We need to Do.It.Now.’ This would inform a true real top down / bottom up approach to embracing healthcare social media within their organisations.

The diabetes contingent: Me, Kim and Mel

The underlying message of the conference – at least for me – was reinforcement of something that I have known and promoted for a long time: health social networks bring people together. Before online social platforms, we did it face-to-face. The message of the ‘modern day kitchen table’ was brought home to me again and again and again, and I understood that the barriers to using social are absolutely not insurmountable – despite feeling that way at times with all the justifying we seem to have to do.

And the message of ‘Connected communities get more done’, rang so true. I thought to the first morning of the conference when I was late because I’d been moderating an hour of the 24 hour World Diabetes Day tweetchat, talking diabetes stigma with people from all over the world, affected by diabetes. I thought to the Spare a Rose; Save a Child campaign. I thought about #DSMA and #DeDOC and #OzDOC and all the ways that our own diabetes community connects to get things done.

My conference fees for the two days of the #MayoInOz conference were covered through the consumer scholarship program. I was not expected to write anything in exchange for the scholarship. Thank you to the organisers of the event, Consumer Health Forum Australia and Melissa Cadzow for the scholarship. You can read more about the conference by clicking on this link for tweets.


Sometimes, the best diabetes meetups involve a few people with diabetes just sitting around having a chat. Perhaps it’s over dinner, or maybe over a coffee. There’s no formal agenda, there are no official speakers. It’s just people with diabetes catching up and talking.

Now, multiply that by … a lot. In fact, put about 40 diabetes advocates in a room together. Throw in a few HCPs as well. And some people from industry. Hell, there may even be a few people from professional and consumer diabetes organisations in there as too.

Now you have #DOCDAY; a diabetes meetup on steroids!


The second annual #DOCDAY event was coordinated and hosted by Bastian Hauck at EASD in Munich. Last year, he had this idea and organised what he thought would be a few people in a café in Stockholm. He underestimated how many people would want to attend, and the room was overflowing with advocates from Europe (and the usual Aussie ring-in).

Dr Andrea Orecchio, right, with Danela D’Onfrio from Portale Diabetes (an Italian diabetes peer site).

This year, he got smart. He hired a room at the conference centre which was a genius move because it not only meant it was so simple and convenient to get to, but it also meant a whole heap of HCPs came along too. (Big hat tips to the divine trio from AADE, Hope Warsaw, Deb Greenwood and Nancy D’Houln, Aussie Dr Kevin Lee, and the delightful Dr Andrea Orecchio from Switzerland who impressed me with his ability to speak (and tweet in) four different languages. Perfectly fluently.)

There was no real structure to the meeting, apart from the insistence that all attendees have their photo taken on an old-school Polaroid camera to be placed on the attendee wall. Bastian kicked off the afternoon, saying a few words and he also asked some people to talk about any exciting diabetes initiatives they’ve been involved in. He asked me because he knows that in my jetlagged state I’m likely to say something inappropriate which will lighten the mood.

I was absolutely enthralled and excited to hear of some of the work other diabetes advocates have been up to lately.   Here is just a taste:

Cannot wait to see this book published!

I simply cannot wait for the release of this new book from the team at Anna PS. Anna Sjoberg and Sofia Larsson-Stern from Sweden have collected stories from 20 people with diabetes and will share their personal experiences of lives with diabetes. The Swedish version of I Can, Want and Dare will be out in time for World Diabetes Day, and the English-language edition will follow shortly after. You can pre-order here. What a brilliant Xmas stocking filler! (Disclosure – Anna and Sofia invited me to contribute to the book. I have no financial interest in the book.)

Med Angel.

Did you know that 93% of people using temperature-sensitive medications are doing it wrong? Neither did I! Amin Zayani has created a very nifty smart sensor and app to help you know if your insulin is being kept at a safe temperature. This is a super easy device to use and is all about safety. I know I can certainly be accused of being very relaxed about keeping may insulin at optimal temperature and (touch wood) have never had a problem. But just at this conference, I was speaking with someone whose insulin had been affected by temperature and was absolutely not working. At all. This is something that will be very handy for a lot of people! Follow Med Angel on Twitter here.

IDF Europe has introduced a social media prize in diabetes. Quite frankly, the DOCDAY room was full of worthy recipients. Nominate someone now!

Peer networks in France with Paul-Louis Fouesnant.

I always love hearing about grass-roots diabetes support initiatives, and Paul-Louis Fouesnant from France spoke about Diab’ Mouv peer events he organises regularly.

So what did I speak about?

I spoke about driving and diabetes, specifically the advocacy win we have just had with the launch of the new Australian Assessing Fitness to Drive Guidelines. (More about that later this week.)

I spoke about CGM subsidies, a hot topic everywhere, but particularly in Germany where a reimbursement program had just been announced.

And finally, I spoke about language, because EASD is one of the most challenging conferences when it comes to language. I spoke about why language matters and why the real changes that are being made in this space are driven by people with diabetes. We have been talking about this for years and years now and it is terrific to see it (finally) on the agenda.

By the end of the afternoon, I was overwhelmed by all of these incredibly inspiring folk. For most of them, this is a labour of love with little, if any, financial reward. We blog because we want to share our stories and connect – nothing more. We come together to share our successes and our frustrations because we know that this is a sympathetic group who ‘get it’. Between now and when or if we next get together, we will keep in touch and continue to share our stories because that’s what we do. Thanks to everyone there for being so generous with this bumbling, jet lagged mess.

Just some of the advocates, activists, bloggers and HCPs in the #DOCDAY room!

My disclosures for my attendance to EASD2016 can be found on this post. 

Twelve hours after arriving in Munich, I found myself in a beautiful tree-lined side street of the city at a diabetes bloggers event coordinated by Roche Diabetes Care. Fuelled by nothing more than coffee and jet lag, I walked into a beautiful building and found myself surrounded by diabetes advocates from around Europe who were probably trying to work out why an Australian had crashed their meeting.

Bastian takes the stage.

Firstly, a little about this group. Roche convened the blogger group a few years ago as a channel to build a relationship with PWD in Europe. (Roche has had a long history of working with consumers. I remember back in 2012 watching the Roche Diabetes Summit in awe and then trying to replicate it here with Australia’s first and only SoMe Summit.) In a very smart move, they engaged DEDOC leader and nice-guy extraordinaire Bastian Hauck to be the liaison between Roche and the community. Bastian has done a stellar job bringing together some absolutely amazing and influential advocates to be part of this work.

The group has now met a few times, and at this year’s EASD, they opened the door to an Australian (slightly less weird now that Australia is part of Eurovision, which, obviously, is the new gold standard measure of inclusiveness. First Eurovision digression.)

The first part of the afternoon session was a demonstration of the yet-to-be-released Roche CGM. A short presentation showed how the device works, with an explanation of the technology. The timeline for release of the product is later this year with launch markets being Sweden, Norway, Netherlands and Denmark.

The soon-to-be-released Roche Insight CGM system.

We were then able to have a play with the device, inserting sensors into ‘fake’ skin pads and just getting an idea of the feel, size and look of it. The CGM app is completely customisable. It looks great – super clean and easy to use.

In a room of generally tech-savvy folk, you can imagine that there were a lot of opinions and feedback about the device. Most, if not all, of the participants were wearing at least one medical device – whether that be a pump, CGM or flash GM (and the slightly OTT Aussie who was wearing all three). We are obviously not the norm, but given our knowledge and experience with diabetes tech, we certainly did have a lot to say.

Dexcom and Insight side-by-side comparison.

There were some things that people really liked about the product. Accuracy was outstanding with MARD being comparable to Dex G5. The profile of the sensor was good – about the same as – maybe slightly lower than – the G5 on my arm when compared side by side. Insertion was super-easy and definitely doable with one hand. And the tape holding the sensor in tape is, apparently, better for people with skin allergies.

But as a first generation CGM, there were some limitations that people felt would frustrate them. The lack of integration with the Roche pump, for example, was of concern – however, this will be remedied with future generations. The first gen will only be compatible with an HTC phone (in a room full of very pro-Apple people, this was not particularly well-received) but, again, this will be addressed with future releases.

Also most unwelcome was the factory-set sensor life. Seven days without the possible of restarting is very surprising. There were some murmurings in the room about this setting a new precedent that other sensor makers would follow. Given that I am currently on day 18 of my sensor and the accuracy is spot on, I’d be bloody furious if I’d had to bin it 11 days ago!

Many of us frequently complain about the waste produced with all our device consumables, and there was some concern that the single-use sensor applicator contained a lot of plastic. Look, this is something that I personally struggle with. Every time I change my Dex sensor, or put in a new pump line or cartridge, I look at what needs to go in the bin and wince. It frustrates me each time I rip open the packaging for a new Medtronic Quickset (my preferred line), a bloody little cap falls out, usually to the floor. I have been using these sets since they first were released (maybe eight or ten years?) and never – not once – have I used the cap.

I get it – we need these consumables to be sterile. And safety and avoiding infection is paramount. But still, some of us are very concerned at the landfill we are contributing to!

Crowd sourcing opinion – What does CGM mean to you?

This discussion was very open. We were welcome to tweet, Instagram, Facebook (and blog) everything that we saw in the room, sharing it with the world. Following the demonstration, we all participated in real-time online feedback, where we commented on what we liked and disliked about the device. Our results and remarks were then shared on a screen for all to see.

Can we, for a moment, just consider how novel and out of character this is? Here is a company talking about a device that has not been released yet. And they are talking about it with a room full of over-sharers who all had screens open to various social media platforms ready to tweet, photograph and provide personal commentary. I have never seen such an open and transparent way to get feedback on a diabetes product, and the team from Roche should be absolutely commended on this approach. More please from more companies!

App making. (Photo credit: @Tadorna)

For the second half of the meeting we spent a most fun couple of hours where we played around with app development. My group – obviously the best – created an app that linked our CGM app with a juice machine to respond to low glucose levels. It also turned on bedroom lights if we were low overnight, to help wake us up. And if the wailing alarms of the app were not cancelled within 15 minutes, an ambulance was called to come and make sure we were okay. I know! Brilliant, right?!

Go team! Anna, Steffi, Sascha

Overall, this was definitely a valuable afternoon learning about new product and also being given the opportunity to meet with some very smart and active diabetes advocates. You bet we were there to be told about Roche’s new CGM, but that was only part of the event and no one in the room is so naïve they don’t know it. But the chance to share ideas and projects and plan for truly global work together outside the device company space was also achieved.

POSTSCRIPT and DISCLOSURES

I’m going to ignore the online discussions that seem to pop up at any conference where PWD manage to score an invite…. Actually, who am I kidding, I’m not. Because I am a little sick and tired of the inevitable complaining and suspicion and passive aggressive comments. I’m a huge advocate for PWD being invited to HCP conferences (I may have written about it once or twice here). For us to get here, we need financial assistance because travel is expensive as is conference registration. So when pharma or device companies offer to bring PWD together to engage in a session they are running – and also provide us with access to the conference, then you bet I am going to think it’s a great idea.

Transparency is important and on this little blog, I will always disclose any arrangements, support, funding or product in place with any company.

So…my disclosures? Well in regard to Roche, none really. I don’t use any Roche products at the moment. I have in the past used their meters, which I have funded myself. I have been an invited speaker at the Roche Educators Day at the ADS-ADEA conference two years running now. And I wrote and disclosed all about that at the time here and here.

Roche did not contribute to my travel or accommodation costs at all to attend EASD this year. They did provide me with press registration, but I had already organised my own, as I do for all conferences I attend. Oh – and they did invite me to a dinner after the blogger event, but jet lag had kicked in so I politely declined. There was no expectation from Roche that I would write about the event (or comment during it). They don’t own my words, I do. But I am incredibly grateful that they are engaging consumers in this way. So thank you to Ute and the team so very much!

As for my disclosures for attending EASD? For the third time, they are all here.

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: