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The insulin playing field

September 22, 2016 in Awareness, Diabetes, Social media | 6 comments

I want to try something new and I need your help. I am trying to work out just how different it is around the world when it comes to paying for a vial of insulin. Here in Australia, a 10ml vial of Humolog costs me just under eight Aussie dollars. What about you?

So, I’m asking for you to post a photo of yourself, with whichever insulin you use (penfill or vial) and tell me how much your out of pocket cost is in whichever currency you use. For some, it will be nothing. For others, a lot more.

Post your photo on the Diabetogenic Facebook page, or tweet it using the hashtag #InsulinPlayingField. And on World Diabetes Day, I’ll share the results.

So go! And share this around. Let’s see how far we can get this going and how different the playing field is across the globe.

The big sell

August 30, 2016 in Conferences, Devices, Diabetes, Health, Healthcare team, Social media, technology | 2 comments

I chaired an interesting session at the Roche Educators’ Day last week (it’s the kick-off event to ADS ADEA each year, held the day before the official conference starts) presented by Sydney endocrinologist Professor Steven Boyages.

The session was called ‘A connected ecosystem for healthcare professionals and their patients.’ (We’ll just ignore the use of the word ‘their’ because, quite frankly, I don’t belong to my HCP, but this post is not about language, so let’s move on….)

Steven started by highlighting there is nowhere to hide when it comes to the online world and diabetes (or any healthcare, really) with this statement: ‘Be prepared: patients will already have looked you up on line.’ (Indeed – the first thing I did when asked to chair his session was Google Professor Steven Boyages. Then I found him on Twitter!) He went on to dismiss any luddite attitudes with the comment ‘If I can do it, you can do it!’

Other important points included that healthcare has – and continues – to move away from being a patriarchal system where what the doctor says goes. And that technology is here to stay. In the case of diabetes, more and more people are expecting their HCP to be as tech savvy as we are, not only knowing about the latest technology, but also being able to use it.

But perhaps the most controversial part of Steven’s talk was when he asked this question: ‘What business are we in?’ Voices across the audience responded with ‘Healthcare’, ‘Caring for people’, and even just ‘People’. He shook his head and paused. ‘No,’ he said. ‘We’re in the business of selling.’

And therein lies the challenge. Because when you look at it, it’s kind of true. HCPs are selling something – health. And to get there, we often need to make changes or do things we don’t particularly like. And that is a bloody hard sell. No one wants to follow directions all the time – especially if those directions include things like jabbing ourselves, or eating lots of green things. (In fact, Steven gave the example of GPs being asked to follow the same BGL monitoring they expect of PWD. Only two out of twenty managed to do it for the week of the trial.)

There needs to be a more attractive proposition and that has to incorporate the tools designed to make diabetes management easier. Those tools include devices and technology as well as communication channels. We expect our connectivity to be outside the 9 – 5 hours of the traditional office and, as Steven said, if we can’t get help from our healthcare team, we’ll find someone available. We already bypass HCPs for most of our decision making – whether it be through the use of technology or advice from peers.

Healthcare has been transformed in recent years, and it’s just the beginning. There will be more and more changes, and more and more expected of the system and those working within it. Which is why everyone needs to get smarter about using the devices, the structures and the data.

During the discussion time at the end of Steven’s talk, someone said, ‘But surely all these new apps and programs add time and we don’t have time.’ They were referring to the program that is used with a new blood glucose monitor. I was shocked at that comment, because it misses one of the key benefits to diabetes technology, so I was pleased with how Steven replied. ‘Not at all,’ he said. ‘In fact, if we are using the technology properly and empowering PWD to use it properly, they will be able to do a lot more of the trouble shooting themselves.’

Knowing how to use devices, understand the data and respond to the information has meant that I rarely need to get in touch with my HCPs outside of when I am actually having a consultation with them. Most of the time, I manage myself. Because I have the tools available and know how to use them.

Being in the business of selling health is indeed tough. The products being sold are not shiny new cars or the latest mobile phones. It’s often not something tangible that can be held up as something aspirational. But health? Surely that is something we all want. We just need some smarter ways to sell it – so that we are willing to buy!

DISCLAIMER

I was invited to chair two sessions at the Roche Educators Day last Tuesday at the ADS ADEA conference. Roche kindly funded my travel to the Gold Coast (my return travel and accommodation were covered by my work). Roche also registered me for the ADS ADEA conference, covering related costs. The also gave me a lovely box of chocolates, most of which I ate myself without sharing, because: chocolate!

SoMe, HCPs and OzDOC at #adsadea2016

August 29, 2016 in Awareness, Conferences, Diabetes, DOC, Engagement, Peer support, Social media, technology | 2 comments

I’d already returned home to Melbourne on Friday morning when Dr Kevin Lee gave his talk on on healthcare social media. I wrote about his planning for the talk here after Kevin engaged OzDOC for some advice on important topics to cover. I’m really sorry I wasn’t there to hear his presentation, although felt there in spirit after I saw this! (Thanks, Ash!)

I reckon that this is the fourth or fifth year the ADS ADEA have spoken about social media and how healthcare professionals can use it safely. I remember seeing diabetes educator Natalie Wischer give a great talk back in 2012 highlighting the different social media platforms available and how they are being used in diabetes. This was just after we launched the weekly #OzDOC tweetchats and I stood up and gave a plug for our weekly online get-together, urging the HCPs in the room to have a look – to lurk – and see what we were so excited about.

I gave a talk the next year (that’s the photo Dr Kevin Lee used in his talk), encouraging HCPs to engage with the online community. And last year at the Roche Educators Day, I ran two practical workshops about how HCPs could use SoMe to connect, enhance and support diabetes care.

It has been on the agenda for a few years, and now it is time to stop talking about it and actually do it.

As mentioned last week, Symplur highlighted just who was talking online at the conference. As usual, the ACBRD team was doing a stellar job live tweeting sessions and promoting their excellent work. And, of course, advocates on the ground were doing their (our?) best to share and engage. There were over 2.7 million impressions on Twitter for the duration of the conference, which is certainly an increase from previous years.

I would really love the ADS and ADEA to be proactive about encouraging social media. I would love for them to look at what happened a couple of weeks ago at the American Association of Diabetes Educators conference and see how meaningful social media interaction between people with diabetes and healthcare professionals can and does happen. Safely. The real engagement and collaboration between the organising professional body and advocates saw impressions on Twitter of over 17.5 million, and over 860 people engaging online.

So, how do we go here in Australia about increasing online presence and discussion? In the room for Dr Kevin Lee’s talk were two of Australia’s most prolific and well-known patient advocates – both high-level users of HCSM. I’m referring to Kim Henshaw and Ashley Ng. I wasn’t in the room, yet was actively participating, re-tweeting and engaging – as were many others during sessions that I was sitting in earlier in the week. Having more consumers in sessions provides that connection with PWD not at the conference to hear and see what is going on.

I also think there was, perhaps, a missed opportunity at the session speaking about social media use. Having an advocate on the panel or chairing the session (and remember: Kim and Ashley were in the room!) would have added significant value to the discussion. Dr Kevin Lee went straight to the source when he was putting together his talk. Think about how great it could have been had one or two of those who helped him pull together his information were on the stage elaborating on their comments. Perhaps next year.

#ADSADEA2016 highlight pics

August 26, 2016 in Advocacy, Awareness, Communication, Conferences, Diabetes, Health, Peer support, Real life, Social media | Leave a comment

I’m back home after three days on the Gold Coast for part of this year’s Australia Diabetes Society – Australian Diabetes Educators Association conference. More to come next week, when I’ll try to pull together my very messy notes.

For today, here are some pictures!

As I took the stage to chair one of two sessions at the Roche Educators Day in Tuesday, I realised I had already been up for seven hours. It was only 11am. Sentences were difficult until my fourth coffee of the day kicked in!

On the job. Professor Steven Boyages’ talk: A connected ecosystem for healthcare professionals & their patients’ was full of practical tips about using technology to support people with diabetes.

This was the moment I opened the new NDSS Diabetes and Emotional Health Handbook (for health professionals supporting people with diabetes) and I saw Diabetogenic on page 24! Thanks for capturing, Professor Jane Speight!

Proud moment!

Advocates running amok. We actually behaved ourselves quite well. Mostly.

Although, we were mighty busy! Three of the top four influencers at the conference happen to be consumer advocates, sharing information from the conference specifically with the intention of reaching other PWD who could not be in the room.

Martha Funnell used this in her talk on day one. Sums up many, many days!

Rather proud of this special young lass. Here’s Ashley presenting on her work focussing on the needs of young people with type 1 diabetes.

This is a combination of jet lag and exhaustion. (Jet lag belonged to Harriet.)

The NDSS stand looked very bright thanks to these beautiful resources from the Young People with Diabetes Program.

And another proud moment. Kim’s outstanding work on the national roll out of Mastering Diabetes means this resource is in the hands of those who need it most: children with type 1 diabetes, their families and schools. Well done, Kim! (And I’m holding Moving on Up which I am equally proud of!)

Spot the diabetes devices….

Gold Coast.

Proper wrap up coming next week. Enjoy your weekend. I know I certainly will! (But you can play catch up by checking out all the #ADSADEA2016 tweets.)

Welcome or not?

August 16, 2016 in Diabetes, DOC, Peer support, Real life, Social media | 10 comments

I’ve been interested to read a few things lately on Twitter about the DOC not being a particularly welcoming environment. I am both saddened and surprised to hear that some feel that way, because I have always found the community to be very, very supportive and welcoming. Perhaps I am fortunate, or perhaps I have just found – and engage with – people who are friendly and happy to embrace new people in the community.

I’m unsure if feeling unwelcome is because there is a sense that the community may be a little like a high school clique. There are people who have known each other many years in this space, so they have a comfortable and easy banter as they share stories and inside jokes. I know that when I started, I was worried about that, but anytime I tried to engage, I found nothing other than friendly responses.

When I first walked into the DOC playground a few years ago now, I was considering starting a blog after years of reading what others were saying about their lives with diabetes. I’d lurked around a few online platforms to see how people interacted and what people said.

Then, one day, I decided I would join a tweet chat, and I tentatively said ‘hello’ to the #DSMA world. The rest is history and now I am a regular contributor and participant – both online and off – in the community.

But it did take me a while to understand the lay of the land and to get a handle on online communication. Trying to adequately put across a point in 140 characters or fewer leaves little room for qualifying comments, so often it’s only the bare bones that can be offered. This can sometimes leave people feeling a little taken aback at the directness of discussions.

I am, by nature, very direct. I take the ‘tell-me-what-I-need-to-know-and-leave-it-at-that’ approach, so Twitter is a perfect platform for me. Say what I want and get out! But I know that sometimes, I come across as being very direct; some may even say confrontational. People who meet me after having only engaged on Twitter say they are surprised that I am a lot warmer in real life that online. (I never know whether to apologise or say thanks to that…)

I had to learn that just because people had differing opinions didn’t mean that they were attacking me, or that I wasn’t welcome in the discussion. In fact, some of the people I respect most in this community are people who I don’t usually agree with. They challenge me to think about things differently and to step out of my comfort zone. I’ve engaged in some really robust and heated discussions about different aspects of diabetes. As long as it is done with respect, (and an understanding that an opposing opinion isn’t a character flaw!), I’m happy to not agree.

And, possibly most importantly, I learnt that I didn’t need to love everyone in the community. I’ve written about that before, and how it came as a huge relief when I realised that I wasn’t going to be friends with everyone; there would be some people I just didn’t really feel any connection to – just as there are many who don’t gel with me.

The DOC is a big community; there are many of us. And when there is a community, there will always be people who are more vocal and more active. But they are not the only people in the community. It really does come down to finding people where there is some sort of synergy, or some way to connect. Just like in real life!

So what’s the take away from this? I hate for people to feel that they can’t be part of the community because they have a different view to others. I have not come across another person in the DOC who I agree with all the time. But equally, I’ve not ever had someone attack me for having a different opinion to them. (Trolls excluded in that last comment, because trolling is attacking and just not necessary.)

I guess the struggle is that when you have a lot of very passionate people given a microphone and a stage, we get very, very worked up at times and defend our position fervently, challenging those who don’t agree, building alliances with those who do. We can be a vocal bunch, we like to be heard and listened to, and we want to defend, defend, defend what we say. I am guilty – if that is the right word – of being and doing all these things.

But I genuinely do want to hear from everyone. I don’t have to agree, or even like, what you are saying, but I want to hear it. Any community is stronger with diversity of opinion, experience and outlook. And the community is weaker when people do not feel that they are free to share their thoughts.

The modern day kitchen table

August 3, 2016 in Communication, Healthcare team, Peer support, Social media | 1 comment

I was super late for last night’s #OzDOC tweetchat, coming in for the second half of the lively discussion. The questions were about how HCPs can engage on healthcare social media (HCSM), and the answers were to assist physician Dr Kevin Lee who is presenting this very topic at the ADS-ADEA conference on the Gold Coast later this month.

In recent years, I have given and heard many talks about why HCPs might want to consider using SoMe as a tool to engage with PWD (or, more broadly – people with any health conditions), and also how they may find SoMe useful to engage with other diabetes HCPs.

Presenting at the 2013 ADS-ADEA meeting about social media and healthcare.

Maybe it’s just me, but I am bemused that usually these presentations are targeted at such an ‘entry’ level. Social media is not new. Healthcare social media is not new. And yet, the presentations about HCSM at most medical conferences all have a ‘101’ feel to them, as though it is emerging technology and a revolutionary and new way to communicate. It is neither of these!

In fact, communities gathering on social media is just peer support 2.0. (Which is what I wrote here. Three years ago….)

And yet, the anxiety around it is still present.

I suspect that there are several reasons for this nervousness.

Firstly, by its very nature, SoMe is unregulated, and I will fight to the death to say this is a good thing, not something to fear. Its organic, unstructured and unpredictable nature is part of its power.

Even in a facilitated forum, (such as as tweetchat), there is only limited control held by the moderator – and a good moderator knows that their role is sometimes to sit back and watch (and encourage) the flow of, and tangents in, the discussion – that is often where the magic happens!

HCPs considering venturing into the patient-held HCSM space (different from interacting with their peers) need to consider what they plan to do once there. Are they going to be providing advice? Or do they want to engage in discussions? Perhaps they just want to quietly lurk, using it as a learning experience.

Whatever they choose do to, simply stepping in and having a look around will, hopefully, alleviate many of the concerns and fears they have about HCSM – especially once they understand there is no mystery to this way of communicating.

But I really do think that it is not our role as PWD using HCSM to provide a comfortable space for HCPs. And we shouldn’t feel the need to moderate our discussion for fear of who is listening in.

I have always considered social media to simply be a different way for having a conversation. There is no mystery behind it and there is nothing to fear. This thread from last night’s tweetchat sums this up perfectly! (Thanks, @MelindaSeed!)

Interweb Jumble #17 – The tech edit

July 22, 2016 in Awareness, Devices, Diabetes, DOC, Pumps, Social media, technology | 4 comments

I woke up today to feeds full of tech – diabetes tech. Plus I seem to be reading heaps and talking about not-so-new, but still awesome tech-y stuff.

Diabetes technology has been on my mind a lot lately (as well as on my body). Mostly, I have been thinking of the evolution of how dtech moves from being a niche market embraced by only a few, to becoming mainstream.

Back in 2001, those of us using pumps were seen as leaders in the dtech area. Many diabetes HCPs had never even seen a pump and certainly were not comfortable encouraging people to use them. The only reason I started using this technology was because I met someone using one at a diabetes event and asked her. I then spoke with my endocrinologist who was incredibly dismissive, labelling the technology as dangerous. I interviewed for a new HCP team to find people who were more willing to embrace technology.

The same thing happened when CGM was launched here.

And the same with new and different other devices. iBGStar, Libre, diabetes apps – most often, the interest is led my people with diabetes who force the establishment to catch up and get on board.

And I think it is still happening. Here are some things that are being spoken about by patient advocates A LOT. How many of your diabetes HCPs would know about the current state of play in the space? Next time you see them, why don’t you ask?

TANDEM

Makers of very cool (and, frustratingly, unavailable here in Australia) t:slim insulin pump, Tandem Diabetes Care, has joined forces with digital health company, TypeZero Technologies. Yesterday’s announcement explained that the two have entered into an agreement whereby the next generation t:slim pump will integrate TypeZeros’ artificial pancreas technology.

More here.

BIGFOOT

#IBelieveInBigfoot even more after news today from the start-up that they have commenced clinical trials of their smartloop automated insulin delivery system. BigFoot Biomedical is hoping to commercialise their product by 2018. That’s way less than 5 years, folks!

More here from the team at Diabetes Mine and here from the team at ASweetLife.

FDA votes on CGM

Looks like our Dex 5-wearing friends in the US will soon have the same classification on their devices as us here in Australia (and in Europe) with the FDA voting to revise labels to support treatment decisions based on CGM data without confirmatory BGL checks.

The live tweeting from the FDA Panel hearing was interesting with some really valuable and insightful comments from patient advocates. (And can I just say how refreshing it is to see that advocates were given such a huge opportunity to speak here?!)

Some interesting discussions on the interwebs as the vote was announced (and in the lead up too). Not everyone is as excited by this development, or on the same side of the advocacy fence, with some claiming that they don’t have the same faith in the tech and fear that access to BGL strips will be removed.

For what it’s worth, my experience with this technology – and using it as classified – has been nothing but positive. The accuracy of the system is, for me, undeniable and I trust it implicitly to treat both high and low BGLs without doing a confirmatory blood check.

And I have also written before that I have used my CGM ‘off label’ for some time – even before the G5 – and am confident in saying I know I am not the only one. This seems like an example of the regulators finally catching up to the reality. Welcome to the party, guys!

More about the FDA vote here.

GONG FOR ED DAMIANO

Congratulations to Ed Damiano who was awarded Boson University’s Innovator of the Year for 2016.

Ed was recognised for his work in developing the iLet Bionic Pancreas.

More here.

WHAT THE HELL IS #OPENAPS?

Someone asked me this the other day – actually using those exact words. I bumbled my way through an explanation and after about 60 seconds remembered THIS piece by Dana Lewis.

Have you had a discussion about this with your (or any) HCPs? And if so, what have they said? Most HCPs here I have spoken to either do not know about it at all, or are very dismissive of it.

It seems that there are a lot of people in the DOC who have kept across the ‘movement’, but not a whole lot of break-through in more traditional corners. As is often the case, I suspect that the way, it will be PWD who drive that.

IN MELBOURNE?

Check out this tech event: Translating type 1 diabetes technology into the everyday. It’s free and there is lots on the agenda.

Saying farewell to one of our own

July 20, 2016 in DOC, Peer support, Social media | 5 comments

Last night’s OzDoc tweetchat was a beautiful tribute to someone who has been part of the OzDOC community pretty much since it started four years ago. Tony, better known as @EatYourMeter, passed away last week, and Kim from OzDOC knew that we would all like to remember him together in our weekly chat.

I didn’t know Tony all that well. Our interactions took place mostly on Tuesday evenings between 8.30 and 9.30. He always provided a compassionate and thoughtful voice to the discussion. Tony lived with type 2 diabetes, and I learnt so much from him because he frequently reminded us that our type 1 perspective (which is, for the most part, the voice of the online community) did not necessarily mirror his experience.

A couple of times he gently pulled me up on some dismissive comment I made about ‘just eating something and giving insulin to deal with it’, with a reminder that not everyone has the ability to do that – not everyone uses insulin! He was never aggressive about it – there was no SoMe outrage in his approach – just a friendly nod to remembering that we all are navigating this diabetes road in different ways.

Tony was very good at noticing what people were interested in and sharing information that he thought they might like. Early on, he picked up on my word nerd tendencies, particularly my love of collective nouns and every now and then, he would tweet me an obscure collective noun reference that would inevitably delight.

Last night, as a group, we remembered Tony. Kim led us through a gorgeous chat where we shared memories of our on- and offline encounters with Tony.

OzDOC started four years ago after three of us – Kim, me and Simon (@STroyCrow) – decided that it would be a good idea to have an Australian-focused chat because we felt that there were particular issues that were of interest and importance to Aussies with diabetes. That was the idea, anyway.

And we were right. But what has happened is much more than that. The group grew to more than just a group of strangers on Twitter coming together for an hour a week. Friendships were formed and many of these friendships moved outside the world of Twitter.

Simon and I have stepped away from coordination roles, but Kim has taken the group from strength-to-strength and her work has meant that a tight-knit, supportive and respectful network has formed. The term used to describe this is #dlove and #dlove is thrown around generously.

Last night, we said good bye to one of our own. I, for one, am so glad to have known Tony, and am terribly sad that he will no longer be a voice in the OzDOC community. But I know that while we all feel this loss, we will not forget Tony or his compassion. He will always be part of the OzDOC world.

#RIPEatYourMeter

Interweb Jumble #16

June 8, 2016 in Conferences, DOC, Health, Real life, Social media, Stigma | 2 comments

My head is full of lists:

Packing list
Travel checklist
Work to do list
Hug-the-kidlet-a-million-times-before-we-leave-her-for-three-weeks list
Diabetes-supplies-for-three-weeks-away list

And a list of great things I’ve seen online lately…

PLAID

Do you read PLAID – a research journal with a focus on people living with and inspired by diabetes? If not, you should. Why? Because it’s awesome!

Here’s the link to the latest edition. I’m really proud to have contributed to it because it is (as already mentioned) awesome, and this edition is all about the patient perspective. I sit very comfortable in there!

Unspeakably Wonderful

A new movie about Banting and Best and the discovery of insulin is hoping to be made by UK production company AngryMan Pictures. Details for how you can contribute to their crowd funding campaign are here.

Diabetic Living online

The Australian edition of Diabetic Living magazine has relaunched its website with a gorgeous new look. Check it out!

Totally (dia)badass

Get yours here.

Take 5 minutes…

…and read these great blog posts that have been recently published:

Anyone thinking of starting on an insulin pump and wanting a front seat view into what it’s all about should jump on board Type 1 Writes. Frank is a couple of weeks into his pump start and is sharing lots about what he is learning. I’ve been pumping for over 15 years now so have completely forgotten about dealing the challenges and successes of starting pump therapy.
Lots of posts coming in from people who were at #DXSydney, sharing their experiences of using Libre. This post listed all the people who attended with links to their blogs. Have a read and share your experiences too.
The Grumpy Pumper is a man of few smiles and, it would appear, few blog posts. Here is his first blog for the year. Pop by and leave a comment suggesting he blog more. Then it won’t just be me nagging him!
Awesome pics in this blog from Scott from Rolling in the D. He hacked his Dexcom and this is what it looks like on the inside!
Why do we need online communities? Anna from Glu gives some reasons here. And she’s right on every count!
Also from Anna, this profoundly moving and brave post about her recent pregnancy loss. These stories need to be told. Thank you, Anna, for sharing yours. I am so, so sorry for your loss.
This one is not a blog post, but a podcast. Stacey Simms produces some awesome podcasts over at Diabetes Connections. Do check them out!

Finally, if you’re looking for some more diabetes blogs to read, healthcare social media guru, Marie Ennis-O’Connor, has curated this list for you. There are 50 blogs to choose from. Get comfortable. Get reading!

Myths be gone

Team Novo Nordisk are doing awesome things to dispel myths about diabetes and address the issue of stigma. This latest video is terrific. Watch. And share. Share. Share.

Off to NOLA

It’s that time of year again. The American Diabetes Association Annual Meeting kicks off in New Orleans at the end of this week. I’ll be there, frantically tweeting.

I hit the road – well, air – tomorrow, so I’ll be out of touch for a bit as I embark on the nightmare transit. But I’ll be mainlining iced-coffee and beignets to keep awake and get in with it all.

Follow along at #2016ADA for the latest happenings in the world of diabetes.

New Orleans = Dr John. So here you go!

Owning our space

June 7, 2016 in Communication, Diabetes, DOC, Engagement, Healthcare team, Peer support, Real life, Social media | Leave a comment

Twitter is a great source of discussion and yesterday this tweet from a diabetes consultant in the UK certainly did start an interesting conversation that had me thinking.

I should point out a couple of things before going any further. The tweet, asking if lack of guidance in social media is a concern, was in response to a tweet from someone else who shared a post from a Facebook page about insulin omission for weight loss. This is a very serious issue – one that I have written about here, (and elsewhere), and worked on a lot in the last decade or so.

Also, the consultant was absolutely not suggesting that social media is a ‘bad’ thing, and he is actually an advocate and user of online platforms, so this is not about the individual. It is about the issue at large.

Obviously, I am a huge fan of social media. Apart from finding online – and more broadly, peer – support an important part of my own personal diabetes management, I have built a significant part of my career extolling the benefits of online connections and the value of sourcing information and support from others living with diabetes.

The changing landscape of diabetes information and support over the last ten or so years has been significant. With more and more available online, and more and more people being online, there has been a real shift from healthcare professionals being the keepers of information and deciding what people with diabetes SHOULD know to a more egalitarian framework from which to source what we need.

While some may believe this to be the end of civilisation as we know it, (dramatic, I know), I consider this change terrific, because instead of having very controlled and conservative information on offer, there is now a veritable smorgasbord of material – and knowledge – from which consumers can pick and choose. Personally – I love being able to do that. Hearing personal experiences and picking up tips and tricks about day-to-day life with diabetes contribute to me making decisions about how to manage my own condition.

One of the suggestions frequently made about how to safely use SoMe is for it to be better moderated. My argument is that the power and value of SoMe platforms is that it is not moderated. Being free to share my ideas and experiences without fear (or perhaps care?) of judgement is not only useful, but also cathartic. And getting feedback from my peers often provides a different lens through which I can view a situation. Much of what I have learnt would not be found in the pages of a textbook, or offered in the office of a HCP. And that’s fine – there are other very valuable and important considerations that are shared in that context.

The idea of moderating online support – or any peer support, actually – is about control. It can be packaged up into a nice parcel of ‘protecting’ the person seeking the information, but that is not only patronising, but also incredibly demeaning. There is enough of that going on in more traditional settings – peer support is where there is freedom from that control – and a freedom to explore different ideas.

For me, peer support has always been about finding my tribe and learning from them. It has been about finding a source of sustenance and care that makes me feel better about my situation. It’s never been about replacing or substituting what I get from my HCPs.

So what is the role of HCPs in our support space? My belief is that it is a place for them to learn. There are times that it may be appropriate – and even encouraged – for HCPs to step in and share. On Facebook, one of Australia’s leading CDEs frequently comments and adds to conversations in closed diabetes groups. Her professional advice is always spot on – never judgemental – and her personal perspective (she has diabetes herself) shows just how it is possible to blend the ‘What-I’m-told-I-should-do’ with the ‘And-this-is-what-works-in-real-life’.

But not everyone who wants to be involved in this space has diabetes, nor should we expect them to. But I think for me, I have a very clear understanding of online and peer support works – and what everyone’s role is. When this works well, it works because it is being led by PWD; they (we!) are the ones driving the discussion and the focus. It’s not dangerous. We don’t need guidance. Because it is our space and we own it.