The Quantified Self & Diabetes
The Quantified Self is a movement to incorporate technology into data acquisition on aspects of a person’s daily life. It’s everywhere, called all kinds of things, including LifeLogging, or HealthKit, combining wearable sensors and wearable computing. For a more thorough introduction, Wikipedia have got you covered.
We live in an age of BIG DATA, where companies, industries and governments are desperately trying to suck you into amazing platforms, services and subscriptions for free (Facebook, anyone?), because having you use their services and products is worth money. To enormously oversimplify, this is because capitalism wants to know how you behave, so they can better direct advertising, sales and products, and in turn get hold of your ‘disposable income’ (yeah, me neither). Anyway, this post is supposed to be about data and diabetes, not capitalism, so back to the point…
I’ve had diabetes since the late 80s, and thankfully, technology is starting to change life for type 1 diabetics. When I was diagnosed, it was all vials, notebooks, weighing scales and a witchcraft like knowledge of the carb content of different foods. Now, honestly, there’s an app for that.
On a daily basis, I use a variety of freely available applications that are fundamental to me being able to get my HbA1c down to the best levels it’s ever been (49 / 6.6%). Here are 4 of the most important to me, that I use on a daily basis:
1. Carbs & Cals
In the past I’ve been vague at best with my carb counting, and I simply blame the fact that this app didn’t exist.
It makes accurately estimating the carbohydrate content of your meals so, so easy, it means your doses can be much more accurate, and you gain a huge amount of insight about what different foods do to your levels, at different times of the day.
This is a very simple, lightweight, blood glucose diary. I use this to see trends and patterns, and it also gives you estimated HbA1c scores, based on your readings. I use this app 10 times a day. (Last couple of weeks I’ve been back on injections for a pump update, hence the spikes, honest!).
This system has changed my life. It’s my first ever pump. It is particularly amazing because it is wireless, and communicates with a secure data platform (snapshot to the left is my current data), which incorporates tons and tons of analysis. The only people who have access to this platform are those I’ve given permission. For me that’s me and my diabetes consultant, but for parents of young kids with T1, that could easily be used by them to see how little Jonny is getting on, and how often he’s testing on that terrifying school trip… for example!
This isn’t diabetes specific, but having tried most of them, is my favourite activity tracker. I use it for running and cycling. Surprise surprise, the more of those I do, the better my control gets.
Caveat: I am extremely technically minded, a bit of a geek you could say. I prefer to use these things than have a variety of glucose diaries and notepads at all times. The above are just a few examples of things that have fundamentally transformed my care, because they encourage me to strive for better results, test more, and to pursue more and more stable blood sugars.
More importantly than the power of the data and the analytics, is the freedom these things allow. Freedom to be able to take control of your own condition, not waiting anxiously for the next checkup and A1c result.
With my work hat on, it is very important to me that people are not ‘locked out’ of the technology they use. There is a tendency for the shiny black box syndrome to become set in. i.e. you don’t need to know how it works, just that it works. There are many reasons for this when it comes to diabetes, ranging from the reasonable assertion that it’s a medical device and it can’t be tampered with, all the way to the fact that it’s in the interest of the companies selling the shiny black box to not let you know how it works or what’s inside, i.e. “you should buy a new one if there’s a problem”, and “we have created something that is magic, now pay us a lot of money for it”. To me it is important that we continue to emphasise that technology is just a tool, it’s not a solution, and that you can make and modify it, you don’t have to just sit back and consume. Enormous hat tip to the amazing Doug Kanter at this point, who has created some beautiful visualisations of his own diabetes data over a year, and recently founded Databetes.
There is a generation of Type 1 diabetics who are amongst the most technically literate people I know (and I work in a digital culture R&D and innovation organisation..). They intuitively understand what technology can do for them, and how to modify it to make it more suitable to their individual needs.
That’s because, to Type 1 diabetics, health data isn’t a lifestyle aspiration with a soft focus Vimeo video, it’s life and death.
Tom Higham is Executive Director of FutureEverything in Manchester, UK. Feel free to get in touch by going to his Twitter account.