Breakfast air bubbles.

Doing a set change in the morning when trying to run out the door always seems to involve so many air bubbles that just won’t budge.

And this gets in the way of me drinking coffee and playing Fish Out of Water endlessly.

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DA-Victoria Connect-In: lots of links

On the weekend, I spoke about diabetes and social media at the Diabetes Australia – Victoria Connect-In forum for 18-25 year olds living with type 1 diabetes. I thought this was a great forum and something I would have really benefited from when I was around 18 or 19, because it probably would have made me move towards an insulin pump far sooner, and also build connections with other T1 folk. I was also stoked to see that Georgie from My Lazy Pancreas started up a hashtag on twitter for this event!

In a nutshell, I talked about how and why I use social media as one component of my diabetes management, and how I had barely talked to another person with diabetes until connecting up with people from the Diabetes Online Community. At the forum, I discussed a range of examples of how social media is used in the Diabetes Online Community, and promised to compile a list of the examples I mentioned. This list is not exhaustive and just provides a snapshot of some good stuff happening out there, and where I started when I first put the words “diabetes and stuff” in Google.

Where I started:

  • Reality Check, the forum managed by the Type 1 Diabetes Network

Examples of product reviews

Examples of Advocacy:

Examples of Support:

Examples of engaging with organisations:

Examples of social media campaigns:

Examples of social media and events:

Examples of awesome:

Hashtags to start with:

Blogs to start with (there are heaps and heaps of great diabetes blogs out there, but these are the main ones that I started reading…now I try and read hundreds!):

Again, this is just a snapshot of where I started with my adventures into social media and diabetes, and some places that I think people should look at if they are new to social media and diabetes. There is heaps out there, and in particular, the Australian scene is growing!

If you are just starting out, don’t forget to have a look at the #OzDOC chat that takes place each Tuesday night at 8.30 EST. The first ever #OzDOC chat took place on Tuesday, 31 July 2012, and the group officially celebrated it’s first birthday last weekend!

JDRF Open Letter to Australian Media.

I love twitter, but I’m usually not much of a re-tweeter.

In saying that, the first thing I saw on twitter this morning was the above video by JDRF Australia. I was impressed with it so I re-tweeted it just about immediately. In short, the video is an open letter from the JDRF Australia CEO Mike Wilson, encouraging the Australian media to report accurately and compassionately about type 1 diabetes during National Diabetes Awareness Week (and hopefully beyond). I think it’s a brilliant thing for an organisation like JDRF to use social media as a mechanism to get on the front foot to inform and control the message around type 1 diabetes.

Two stats in the the JDRF ‘Type 1 Diabetes in the Media’ survey that supports the video stood out to me:

93.6% of respondents felt that television, print, and radio media did not correctly distinguish between type 1 diabetes and type 2 diabetes.

I’ve written before that I think changing the name of type 1 diabetes is not the way to go. I think we should focus our attention, as JDRF are doing here, on highlighting the important distinction between type 1 and type 2 and raising awareness with an influential target audience – the media. This is an important distinction, as the media impacts on for people living with type 1; decision/policy makers; and the broader community. Increased awareness of the distinction will in turn, pave the way for positive changes around the day-to-day issues that face people living with diabetes.

As one of the 122,300 Australians referred to in the video, I can absolutely relate to what Mike is discussing. Inaccurate, insensitive (note – I am not a “diabetes sufferer”) or plain odd reporting of type 1 diabetes can be frustrating, arduous and deflating. Too often the media gets this wrong

The good news is that unlike type 1 diabetes, inaccurate reporting in the media is entirely preventable! So a plea to journalists and media folk everywhere – I love seeing type 1 diabetes accurately discussed in the media, and I am entirely likely to share your article on social media if you take the time to represent the condition factually, and with an appropriate level of understanding.

People are using social media to connect with others living with type 1 diabetes (58.5%), as well as get reputable information straight from the source (63.9%).

To me, 58.5% is a really great figure, and I doubt this would have been the case four of five years ago. I’ve been a social media convert for a long time, but it took me a while to use the power of social media in relation to my life with diabetes. This figure proves that social media has a significant place in diabetes management and more and more Australians are turning to social media for information, support and understanding.

My view is that social media is about three things – connecting people with others, providing access to safe places to share (whether that is conferences, organisations or online chats) and putting the power of time back in the hands of the community. Time is on of our most important assets and social media provides us with the scope to connect when, and how, we want.

I’ve got my fingers crossed that this figure reaches 75% of people over time. The more people using social media has the potential to increase awareness about both forms of diabetes in the community.

Anyway – great job Mike. Great job JDRF.

Note 1: It looks like JDRF have put together a “media toolkit” to assist people respond to poor coverage of type 1 diabetes during National Diabetes Awareness Week. It would be interesting to hear how many people use this toolkit and what outcomes they get, and of course, how many times type 1 is report both really well, and really poorly over the coming week. 

Note 2: I think it’s also fundamentally important that the media accurately reports on type 2. No one chooses to get diabetes, regardless of whether it is type 1, type 2 or type 4,240,4503. I feel terrible for the people I know with type 2 when I see poor reporting and plain victim blaming of people with type 2. It doesn’t help anything.