I’m still playing catch up on the goings on at EASD. It was such a busy conference – in general and for me personally – that my head is still lost in a lot of what happened and what I saw. It’s somewhat frustrating for me because diabetes conferences are seen as an opportunity for so many meetings of different groups and projects I’m involved in, and that means I don’t get to anywhere near the number of sessions I would like to. When I can, I make sure I live tweet my way through (that’s how I take notes to do write ups later), but this conference was so busy that there was very limited time for that.

But I still did get to see a lot thanks to the satellite events I was invited to and asked to speak at. Plus, this year at EASD, I was involved in something new that was super exciting.

DZD meets #DEDOC was a novel session combining young researchers and (not necessarily young) people with diabetes to give different perspectives on a variety of current research programs. The event was presented by Deutsches Zentrum für Diabetesforschung.

(My  very limited German (i.e. I sang in St Matthew’s Passionat University – badly – and was in the orchestra for a German-language version of Threepenny Opera, or rather, Die Dreigroschenoper) is apparently good enough to translate that as the Diabetes Centre for Diabetes Research – so, I guess I’m almost bi-lingual now.)

Bastian Hauck hosted the event and was involved in the project to nominate PWD to speak at the event, and encourage other PWD who were at EASD to come along and listen. This was Bastian doing what he does best – facilitate discussion and encourage engagement by different stakeholders. He always manages to ask questions that get people thinking in different ways and did a stellar job again in this event.

The session was not designed as an excuse for PWD to be critical of the research and researchers, or to find fault in what they were doing. It was not to query the merits of the research either. It was to give the researchers an opportunity to speak about their work (in a rapid fire, five minute pitch), and for PWD to engage in that discussion, asking questions and explaining the relevance of the research to actually living with diabetes. While the project may not have actually come directly from PWD, it was a true collaboration where researchers spoke of what drives them, and we shared what we hope from science.

So, what research was on show?

Firstly, we had Dr Stefan Kabisch speaking about research which compared dietary prevention and treatment of type 2 diabetes with two different interventions: one low carb and one low fat. Cathy van de Mortelewas the PWD involved in this segment of the session,  and we couldn’t help but have a little giggle that she had been selected. Those who know Cathy know she is anincredible baker and cook. Her creations are magical and if I lived in Belgium, I would be at her place for dinner three nights a week. But low carb and low fat? Not so much! However, she did give a really useful perspective on the need to remember that different eating plans need to be sustainable and what works for one person may not work for another.

Secondly, Dr Carolin Danielspoke about her research in type 1 diabetes prevention vaccines. Dr Katarina Braune stepped in as the PWD (she is also a researcher and endo) to give her comments on the research. It was interesting hearing Katarina, because she comes from the perspective of a scientist as well as a PWD, so her considerations were different to other PWD who spoke. Her questions and comments incorporated the scientific as much as the ‘real life’, and I loved the way she was able to so succinctly and eloquently translate it all so it made sense to someone like me without a scientific bone in my body!

And finally, Dr Julia Szendrödispoke about diabetes-related complications. While the research was specifically about the mechanisms in the development of complications, as well as looking at potential interventions, I was invited to be the PWD in this discussion to lend my language focus. I highlighted how conversations about diabetes-related complications need to be without judgement and stigma, and that at all times, remember that although a single body part may be in question when speaking about a specific complication, it is attached to a person with a whole body and mind that must also be considered.

To be honest, I felt that my comments were almost redundant because Julia did such a beautiful job in her five minute explanation of her work of ensuring that there was no blaming or shaming. I thanked her for this because the language in pretty much every other discussion of complications I had seen that week was not all that palatable!

I love the idea of including PWD to shape diabetes research. And I loved the discussion at EASD. It was an excellent example of how to include PWD in discussions – even highly scientific discussions. And just how easily it can be done!

This event was the first one, but hopefully the organisers have seen the value of conversation-based sessions including different stakeholders. It would be great for events such as this to attract even more attendees – researchers, HCPs and PWD – although a huge thanks to the German PWD contingent who was there, flying the advocate flag and supporting us – and to see them on the main program of the conference.

DISCLOSURE

I was invited to provide my perspective at the DZD meets #DEDOC presented by Deutsches Zentrum für Diabetesforschung. I did not receive any payment to speak at the session. Thanks to Bastian Hauck from DEDOC (the German Diabetes Online Community) for involving me!

Roche Diabetes Care (Global) covered my (economy) travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #EASD2018 and present at their media event the day before EASD. Roche Diabetes Care also assisted with providing me press registration to attend all areas of the EASD meeting.