Diabetics hacking their medical tech & what it means for all of us

With this and a little know-how...

It's an interesting time right now in the Type 1 Diabetes community, a following coined #WeAreNotWaiting where technical Diabetics have taken it upon themselves to hack \ reverse engineer their medical devices to enhance their ability. What's very important about this movement is that they are sharing this knowledge with everyone.

Hashtag #WeAreNotWaiting is the rally cry of folks in the diabetes community who are taking matters into their own hands; they’re developing platforms and apps and cloud-based solutions, and reverse-engineering existing products when needed in order to help people with diabetes better utilize devices and health data for improved outcomes.
The tagline “We Are Not Waiting” was the result of a group discussion at the first-ever DiabetesMine D-Data ExChange event in November 2013 at Stanford University.  DiabetesMine

There are two key devices that the community are hacking, Continuous Glucose Monitors (CGM) and Insulin Pumps, while both are not very popular in the UK due to lack of NHS funding they are starting to become more popular - if a little too slowly for us Diabetics.


Why does this matter?

The medical device industry is a bit of a joke, making significant profit from charging high prices for cheap consumables and lack of need for innovation. Add to this the lengthy legal and health trial processes for medical equipment results in a very slow progress of new tech. While I agree there is high R&D cost and safety to take into consideration, there are areas where this is a rubbish excuse: access to your data and usability.

Give me MY BLOODY DATA (literally)

See them holes, that's me accessing my data
See them holes, that's me accessing my data

I am blessed to have an insulin Pump and a self funded part time use CGM, both produce a large amount of data on my insulin usage, blood sugars and carb consumption. But well before this (11 years ago?) I had a wealth of data from my Blood tester, to get access to this data required an over expensive custom cable and software from the manufacture that is more complicated to understand than the reason I have Type 1 Diabetes in the first place. Also, of course there is no common protocol for all these devices.

To sum it up, the situation was and still is a joke.

I have a large amount of useful data but there is too much hassle to get value from it, also if you shared anything to a doctor that had a chart they would freak-out. Back to manually writing readings into a book. I have raised this as a concern over the years, requesting access to more technical / capable products, but always getting brushed away. Poorly managed Type 1 Diabetes could cut your life expectancy by 20 years.

To all the doctors over the years who have told me not to worry, "you are a good diabetic". Yes I am, but I can be better and it's my life on the line, not yours.

What to do?

As said we live in an interesting time now. Access to technical equipment is cheap, very mature zero cost and easy to access programming tools available and a wealth of developers. If I can look at my phone and wirelessly control my lights, why do I have to sit here and manually write down my blood test readings? To paper! Yes, paper! Who writes things down on paper these days!?
Many have asked this in the Diabetic community and more importantly some have taken it upon themselves to hack together solutions on top of their current medical equipment. From this bigger, more challenging questions and solutions happen.

If I can read my CGM data and can communicate with my pump - why are they not talking to each-other and helping me managing my blood sugars?

I'm not diabetic, this means little to me

It will mean a lot, you see, people are now not waiting for the establishment to react and provide solutions to our conditions, literally #WeAreNotWaiting and developing solutions to give us access to our data and make that data work for us. We will not cure diabetes, but we can take current technology and property configured allow it to help us manage our condition. This, is a significant mental win and can add years to your life expectancy.

  • I know my child's blood readings while they sleep over at a friends | NightScout
  • I can have confidence that if my sugars fall dangerously low over night my pump will switch off | DIYPS
  • I can see my blood sugars by glancing at my watch while rushing to that meeting | Dexdrip
  • I have easy access anywhere via the web on my data with suggested patterns highlighted that need attention | Tidepool
  • I can reduce my stress and improve the length and quality of my life by using what I have, better

This is not unique to the Type 1 Diabetic community, it will touch all of you in many different ways. The community are building and directing the future of your health care.


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The contents of this site is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your Diabetes support team or other qualified health provider with any questions you may have regarding your medical condition.Sorry, have to say something like this!