Merry Christmas folks.

Merry Christmas to everyone that happens to read this blog of random thoughts about diabetes. I don’t do it for the reader numbers or page hits – I have always written this blog as a mechanism to put my thoughts on [electronic] paper.

But I certainly appreciate people that do take their time to read my blog from time to time.

Wishing you all the very best and a happy, healthy and safe Christmas.

Cheers
Matt.

20131225-213844.jpg

Advertisements

Dexcom – trial two.

Today I pulled off the Dexcom sensor that I had on loan from my educator. Although it lasted 23 days, much longer than the recommended wear time, my skin looks entirely fine. Like last time, it stayed on with the help of plenty of Opsite. Probably even better than last time.

As seen on with the photo below, the Dexcom had no signs of losing accuracy. This photo was yesterday afternoon.
20131218-202508.jpg

I took it off mostly to get it back to my educator before Christmas, so I do wonder how much longer it would last. A sensor lasting for a month or so almost makes it affordable enough to do on a more I going basis. Almost.

Whilst the Dexcom provides a brilliant complement to finger prick checks and so forth, wearing both a pump and a Dexcom can be a bit draining. I’m thinking of having a day off the pump tomorrow, just to freshen up a bit. It will be my first since getting the pump.
Should be interesting!

5 ways the World Diabetes Congress can better engage consumers

20131209-134649.jpg

I’ve been to a lot of conferences in work and volunteer roles. As an attendee, an organiser and a speaker. I’ve seen good conferences, bad conferences, and everything in between.

Attending three days of the World Diabetes Congress in Melbourne as a “consumer” was a different and enjoyable experience. It was brilliant to have this global congress in my backyard of Melbourne, and to have the opportunity to attend purely as a interested consumer.

The Congress has previously been targeted at healthcare professionals, researchers, scientists, policy makers, government representatives and product/pharmaceutical companies. I understand that in recognition of the active, and growing, diabetes consumer lobby, this was the first time people with diabetes have been able to attend the conference with a specific consumer registration.

It’s also common sense.

However, to improve the overall experience for people with diabetes, I think there are five clear opportunities for the World Diabetes Congress to better engage with consumers in Vancouver 2015. This is not intended as a critique, but just some thoughts based on my experience.

1. Consumer only, consumer oriented sessions

One of the reasons I turned to social media as a tool to support my diabetes management was to learn more about how other people live with diabetes – through blogs and twitter in particular. Take that concept, and apply it to a global in-person experience like a World Diabetes Congress, and there is a massive opportunity to provide a great experience for consumers. You just need to Google “diabetes blogs” to uncover thousands of great stories about how people live with diabetes, their thoughts on government policy and ways that technology can better suit our needs – certainly enough to construct three days worth of entertaining and informative sessions.

I think there was an attempt to do this through the “Living with Diabetes” stream of the Congress, however there were some speakers in this stream talking about how other people –  their patients, their communities or their populations – live with diabetes, as opposed to them personally. It should come as no surprise that Kerri’s session about Living with diabetes in a busy world” was one of the busiest I attended, as it focused purely on life before and life with, diabetes.

Consumer only sessions would encourage more people living with diabetes to attend, and feel like an active participant in the Congress, rather than just a topic of conversation. Granted, I understand the notion that if the session was closed off to other delegates, we are missing the opportunity to showcase the realities of living with diabetes, but I think this needs to be weighed up with the opportunity to form connections with others, and to discuss matters of shared importance from a mutually shared playing field.

2. Better integration of social media

So, there was a hashtag…#WDC2013. The hashtag was pretty well utilised, particularly by consumers discussing the key takeaway messages they took from some sessions (not to mention organise coordinated coffee runs). But social media could have been better integrated into the congress to provide opportunities for consumers and others, to have discussions online, and potentially then in person.

How about:

  • providing twitter walls in rooms to provide a live demonstration of how people with diabetes use twitter to discuss important issues;
  • allowing people to ask questions or provide feedback in-session via twitter;
  • offering a twitter masterclass for people wanting to know more about social media and twitter for conferences on the morning of the first congress day;
  • providing twitter handles for speakers in the program;
  • including best practice guidelines of how to use the hashtag in the congress bag; or
  • listing twitter usernames on nametags.

It’s no secret that diabetes consumers are increasingly using twitter to engage with other people with diabetes, product companies and diabetes organisations. We want to feel involved, and perhaps more importantly, have the opportunity to be involved. Social media can do this if properly integrated into the congress, and may also provide the non-social media user, or even the social media cynic, with a better appreciation of why and how we do use it for positive purposes.

3. Re-design of the exhibition hall

Consumers were restricted access from the exhibition hall, containing product companies, charities, support organisations, government agencies and other businesses.

The back of the consumer pass read as follows:

 Following Australian legislation (Therapeutic Goods Act 1989; Therapeutic Goods regulation 1990 and Therapeutic Goods Advertising Code) prescription medicines can only be advertised to health professionals; therefore the special Australian consumer day rate does not permit you to access the commercial trade display in bays 11 to 16 in the Melbourne Exhibition Centre. Non-compliance will result in exemption from the conference.

The irony was, of course, that people with diabetes were able to access the exhibition hall if they were an exhibitor, part of the IDF Young Leaders Program or if they bought a different form of registration. Further, consumers were allowed access into the Diabetes Cafe, that provided a clear view of the Exhibition Hall – including the names of some prescription medicines. It all felt a bit like The Simpsons episode with the velvet rope. More importantly, there were a number of organisations in that exhibition hall that were not promoting prescription medicines. JDRF, Diabetes Counselling Online, the Type 1 Diabetes Network and Diabetes Australia, just to name a few. Not to mention the 5 different companies offering on-the-spot HbA1c testing.

Sure, it is important to follow regulations within legislation, but it is equally important to consider how some creativity can be utilised to ensure consumers do not feel like they are. The Melbourne Convention and Exhibition Centre is a big place and it would be undeniably simple to separate the room into two sections – one including prescription medicines, and one without. Problem solved.

This would provide a win for consumers – to learn more about what diabetes companies and organisations are working on, but also a win for product companies and diabetes organisations to promote their work, products (prescription medicines aside) and offerings to consumers.

Besides, consumers love freebies.
 

20131210-072054.jpg
4. Improved use of language

Sure, the IDF can’t control or mandate the use of language by speakers at the congress, but if the IDF doesn’t set the standard of best-practice language in a setting like this Congress, then who will?

I know many consumers were frustrated with the use of words like compliance and sufferer, or sessions where the implication – intended or otherwise – was that some people with diabetes were somehow deviating from a simple formula. This language shows a misunderstanding of how people perceive their diabetes and how we would like to be talked to and talked about.

The establishment and recommendation of guidelines for language by presenters would make consumers feel more comfortable in sessions. Diabetes Australia has made a good start to this through the development of a Language Position Statement, and the application of these guidelines would support a shared understanding of the lived experience.

5. Provision of a relaxed space for consumers to chat

There was some great sessions at WDC 2013, but like any Congress, it was as much about the sessions as it was the discussions that happen in the breaks. The difference is, that consumers are not necessarily networking with a professional intent in mind, but more to draw upon the benefits of peer support. 

Ultimately, my highlight of the congress was catching up with friends, both old and new, that live with diabetes, but I was fortunate to know a number of people before attending the event. So I was thinking, if I was a consumer attending without knowing anyone, what would support me to meet people with diabetes. Well – probably a designated relaxed space for consumers to come together, grab a coffee and have a chat. Not everyone feels comfortable in a “support group” – myself included, but many people just love having a chat to someone else that understands.

Research is continually showing that peer support is a positive influence on people living with diabetes but unfortunately, these experiences usually feel few and far between. If the World Diabetes Congress is to really hit the mark for diabetes consumers, it needs to both provide sessions that are relevant and suitable, but also capitalise on the fact that a range of consumers are in the one place at the one time.

The success of a social event on the Tuesday night demonstrates the need to support consumer interaction. Over thirty people got together on Tuesday night to catch up, have a drink, meet new people and participate in a live #OzDoc tweet chat. Imagine the possibilities if this was truly embedded in the Congress?

So whilst participating in a Congress can be quite exhausting, engagement with other people with diabetes can be energizing. And if you haven’t noticed the trend by now – many people with diabetes like talking to other people with diabetes.

Also, there were some sessions that highlighted how fortunate Australia is to have a health system that for the most part, looks after us folk with diabetes. The disparity between countries like Australia and many other countries in terms of access to healthcare, insulin and even basic diabetes management support is stark. Georgie has covered some of these issues.

To solve these issues takes significant political commitment, ingenuity and of course, money. I’d like to see the funds raised from consumer registrations collected and utilised to support people with diabetes in developing countries, or countries struck by natural disaster, or to a program like Life For A Child. It may not be a lot of money, but I think it’s the right thing to do from a social responsibility perspective.

So, there you have it. A few thoughts based on my experiences as to how consumers can be better catered for in the World Diabetes Congress. I enjoyed my experience at the Congress, but I think consumers can ask for, and expect more from the World Diabetes Congress in future iterations.

If you went to WDC2013, I’d love to hear your thoughts. Alternatively – if you decided not to attend as a person with diabetes, I’d love to hear why.

Good luck Vancouver!

Disclaimer: I funded my attendance for day 1 of the Congress, however I was also there as a representative of the Type 1 Diabetes Network. I attended days 2 and 3 of the Congress as part of the Diabetes Australia Young Leaders Program, however after three massive days, I don’t feel very young! .

The great hypo hangover of World Diabetes Congress 2013 – Day 1/2

Last night, after the first proper day of the World Diabetes Congress in my beloved hometown of Melbourne, this hypo happened.

20131204-161131.jpg

As you can see, I was low and asleep for about an hour without waking, which was slightly scary.

I normally wake up very easily for overnight hypos, but you can seen by that graph (I have the Dexcom on loan from my diabetes educator and last night just reaffirmed the importance of CGM tech, even if it took a while for me to respond) it took me some time to wake up to the Dexcom yelling at me that I was low. And really low – the finger prick check registered 2.5.

I’m very rarely 2.5.

What caused it? I can only assume it was due to a hectic day which went as follows:

  • Woke up at 5am
  • Left home at 6am
  • Got to Melbourne Exhibition and Convention Centre at 7am
  • Set-up the Type 1 Diabetes Network exhibition stall
  • Essentially was on the stall all day with some other T1DN folk
  • Ran to my car, got changed into my suit and jumped on two trams to get to the showcase work function of the year (massive blood sugar rise during this function, presumably a bit of stress!)
  • Had a chat to some people at the function
  • Got back out onto the streets of Melbourne and ran across the Southbank foot bridge to get to the #OzDoc meet-up and live in-person yet online tweet chat
  • Got a beer
  • Met some new folk from Oz, but also some from Nigeria, Germany and the UK
  • Had a late night coffee
  • Got home at 12.30pm
  • I’ve spent the second day of WDC 2013 with a huge hypo hangover that is only now subsiding.

    But it’s been a great two days already. The Type 1 Diabetes Network launched a new website that acts as the culmination of a lot of hard work some some dedicated volunteers. In particular, this includes the rewritten and redesigned Starter Kit for people newly diagnosed with type 1. An older version of the Starter Kit was something that made me feel more comfortable about my diabetes, so I was pleased and proud to see the new version out there for the public, and I hope it has the same impact for others.

    The #OzDOC twitter chat was brilliant as well. Whilst I was slightly distracted after a huge day, it was great to walk into a room of people – some familiar faces and some new ones – all talking about their experiences with diabetes, regardless of type 1 or type 2. It’s one thing talking to people online. It’s even more fun chatting in person trying to solve all the world’s problems and talk about how Australia is going to win the cricket.

    So much to see, so many sessions to attend and so many people to talk to at this conference. In fact, it’s slightly overwhelming to sit in some sessions with about 20 other people with diabetes that I would consider friends, given I barely knew another person with diabetes until a few years ago!

    Hoping fora better nights sleep tonight. Meanwhile, some photos from the Type 1 Diabetes Network stall below:

    20131204-160730.jpg

    20131204-160741.jpg

    20131204-160751.jpg

    Disclaimer: I funded my attendance for Day 1 of the Congress, however I was also there as a representative of the Type 1 Diabetes Network. I am attending days 2 and 3 of the Congress as part of the Diabetes Australia Young Leaders Program.