Yesterday, I sat in meetings, listened to talks and attended press briefings. The EASD conference is shaping up to be a very busy one and I am doing my best to get to as many things as I can whilst still making sure I get to catch up with as many online community people as possible.
And thank goodness for those people; for the people I’ve seen in person at the conference and for being able to sit in for a very short while on this week’s OzDOC tweetchat.
These conferences are critically important for a number of reasons. They bring together the biggest and brightest people who are most admirably working to improve the lives of people living with diabetes. These are minds far smarted than mine – they are amazingly brilliant professionals. I admire them on many, many levels.
But too often I get the feeling that people with diabetes are lost in the messaging and completely forgotten. The language being used has us as passive ‘subjects’ (thank you to Professor Richard Holt (@RichardGHolt) for your tweet, by the way!), not involved in what’s going on. It’s kind of like these conferences are a magical land where diabetes is spoken about as a thing on its own, forgetting that it is always attached to actual real people living actual real lives in the actual real world.
One meeting I sat in today listed ‘key stakeholders’ involved in a new ‘patient’ education program. The glaring omission in this esteemed list was people with diabetes.
In another session, the speaker was complaining about the inability to get accurate data from device companies about ‘patient opinion’ of their products. There seemed to be a complete lack of thought that perhaps people using those devices might be able to provide the information being sought.
In both sessions, I thought about standing up and saying something, but you know what? Sometimes I get sick of the sound of my own voice saying the same things over and over.
This is not where I say that people with diabetes need a seat at the table of organising committees and advisory boards. Because I say that all the time.
This is where I remember that it is up to us to cut through the noise, ignore the fanfare and the superfluous crap (of which there is much) and try to find the things that are actually going to make life with diabetes a little – just a little – bit easier. It’s there – it’s being spoken about and there are glossy brochures promoting it.
It’s just that the wrong people are being spoken to.
I got up close and personal with the new Abbott FreeStyle Libre system today, getting to see it in action on a representative from Abbott. Despite begging, pleading and promising to not tell anyone (except, of course, the pretend people who read this blog), I was unable to get any details about an Australian release date. Social media musings, however, suggest that we are looking at early next year. Watch this space!