Curled up in the comfort of my bed in Melbourne on Saturday night, I was transported to London where I was watching the live stream and live tweets of the Type 1 Diabetes Rise of the Machines event. (You can read details of that here, or by checking out the #T1DRoM Twitter stream.)

When you are not actually there and able to see and gauge the reaction of the audience, it can be easy to misinterpret the vibe of the room. I couldn’t see the faces or body language of the people in the audience, so I wasn’t sure if my response was the same as theirs.

But there are somethings that can’t be missed – especially with a live Twitter feed!

A representative from one of the device companies was speaking about their range of products, one of which is a blinded CGM device*. Immediately, I bristled. His words celebrating the ‘blinded’ nature of the device, ‘There’s no way for you to interfere with it’,  did nothing to make me feel more reassured at what he was saying.

The tweet I sent out pretty much sums up how I felt about his comments:

And this one from Dana Lewis, who was a guest speaker at the event, was bang on:

Yeah – clearly I was not the only one who had that reaction!

I remember a number of years ago wearing a blinded CGM. It was actually the first CGM here in Australia and I was on a trial for something (I actually can’t remember what the trial was for…) and wearing the clunky CGM was part of the study.

But I certainly do remember demanding that once I returned the CGM (after about 3 or 4 days), I was given a print out of my data. ‘Why would you want that?’ the trial nurse asked me. I imagine that the look I gave her could only be described as ‘withering’.

‘Um…so I can see what is going on with my glucose levels throughout the day. That data is gold – there is no way I will ever have seen anything like it before and the insights will be incredibly useful.’

‘But you probably won’t be able to interpret it all. And what are you going to do with the data?’ That question was asked with an element of suspicion.

I don’t suffer fools and was about to yell loudly at the trial nurse who needed some lessons in ‘patient empowerment’, so I decided to take my questions elsewhere, asking to see the trial supervisor who had enrolled me in the study. The result was a crisp envelope with my name neatly printed across the front handed to me at the end of my next visit to the centre.

Fast forward – probably about 17 years – and I wear CGM all the time and use the data to make daily adjustments to my insulin doses. (Well I did until Loop took over that for me. Reason #124978 I love Loop. Have I mentioned that before?)

I can’t imagine having something connected to me that is collecting information that I could use in real time to improve my diabetes management and not be able to access that data. How frustrating it would be to have something attached to me that could tell me when I was going out of range, but not letting me know it at the time so I could actually do something about it!

Today, if a healthcare professional suggested I wear a device for any period of time where I could not access the data there is no way I would agree.

If you think that it is a good idea because not all PWD could understand the information, then that is a shortcoming of the education process – not a shortcoming of the person with diabetes. And, yes, of course not everyone wants to see all their data, but they should certainly have it offered to them if it is out there!

Denying us access to our own data is simply another way of trying to control the narrative of our health condition and our health education. Not arming us with the information – especially if it is readily available – serves no one.

*Blinded devices are often referred to as the ‘Pro’ version which makes me a little annoyed. Pretty sure the ‘Pros’ here are the ones wearing the devices and analysing and acting on the data 24/7…