Lived experience shining at #ATTD2022

Throughout ATTD I got to repeatedly tell an origin story that led us to this year’s #dedoc° symposium. I’ve told the story here before, but I’m going to again for anyone new, or anyone who is after a refresher.

It’s 2015 and EASD in Stockholm. A group of people with diabetes are crowded together in the overheated backroom of a cafe in the centre of the city. Organising and leading this catch up is Bastian Hauck who, just a few years earlier, brought people from the german-based diabetes community together online (in tweet chats) and for in person events. His idea here was that anyone with diabetes, or connected to the conference, from anywhere in the world, could pop in and share what they were up to that was benefitting their corner of the diabetes world. I’ll add that this was a slightly turbulent time in some parts of the DOC in Europe. Local online communities were feeling the effects of some bitter rifts. #docday° wasn’t about that, and it wasn’t about where you were from either. It was about providing a platform for people with diabetes to network and share and give and get support.

And that’s exactly what happened. Honestly, I can’t remember all that much of what was spoken about. I do remember diabetes advocate from Sweden, Josephine, unabashedly stripping down to her underwear to show off the latest AnnaPS designs – a range of clothing created especially to comfortably and conveniently house diabetes devices. It won’t come as a surprise to many people that I spoke about language and communication, and the work Diabetes Australia was doing in this space and how it was the diabetes community that was helping spread the word.

I also remember the cardamom buns speckled with sugar pearls, but this is not relevant to the story, and purely serving as a reminder to find a recipe and make some.

So there we were, far away from the actual conference (because most of the advocates who were there didn’t have registration badges to get in), and very separate from where the HCPs were talking about … well … talking about us.

Twelve months later EASD moved to Munich. This time, Bastian had managed to negotiate with the event organisers for a room at the conference centre. Most of the advocates who were there for other satellite events had secured registrations badges, and could easily access all spaces. Now, instead of needing to schlep across town to meet, we had a dedicated space for a couple of hours. It also means that HCPs could pop into the event in between sessions. And a few did!

This has been the model for #docday° at EASD and, more recently, ATTD as well. The meetups were held at the conference centre and each time the number of HCPs would grow. It worked! Until, of course COVID threw a spanner in all the diabetes conference works. And so, we moved online to virtual gatherings which turned out to be quite amazing as it opened up the floor to a lot of advocates who ordinarily might not be able to access the meetings in Europe.

And that brings us to this year. The first large international diabetes conference was back on – after a couple of reschedules and location changes. And with it would, of course, be the global #dedoc° community, but this time, rather than a satellite or adjacent session, it would be part of the scientific program. There on the website was the first ever #dedoc° symposium. This was (is!) HUGE! It marks a real change in how and where people with diabetes, our stories and our position is considered at what has in the past been the domain of health professionals and researchers.

When you live by the motto ‘Nothing about us without us’ this is a very comfortable place to be. Bastian and the #dedoc° team and supporters had moved the needle, and shown that people with diabetes can be incorporated into these conferences with ease. The program for the session was determined by what have been key discussions in the diabetes community for some time: access, stigma and DIY technologies. And guess what? Those very topics were also mentioned by HCPs in other sessions.

There have been well over a dozen #docday° events now. There has been conversation after conversation after conversation about how to better include people with diabetes in these sorts of events in a meaningful way. There has been community working together to make it happen. And here we are.

For the record, the room was full to overflowing. And the vast majority of the people there were not people with diabetes. Healthcare professionals and researchers made the conscious decision to walk into Hall 118 at 3pm on Wednesday 27 April to hear from the diabetes community; to learn from the diabetes community.

If you missed it, here it is! The other amazing thing about this Symposium was that, unlike all other sessions, it wasn’t only open to people who had registered for ATTD. It was live streamed across #dedoc° socials and is available now for anyone to watch on demand. So, watch now! It was such an honour to be asked to moderate this session and to be able to present the three incredibly speakers from the diabetes community. Right where they – where we – belong.

DISCLOSURE

My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy. 

Thanks to ATTD for providing me with a press pass to attend the conference.

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