I was so thrilled to be involved in the planning for the recent DIY Diabetes Technology Day in UCD sponsored by Insight Centre for Data Analytics and the OPEN Diabetes Project.
It was such a great day!!! We got to meet some global names in the diabetes online community as well as a few of our own Irish diabetes Heroes.
We recorded the event and will share the finished video next week. In the meantime, I decided to go back to basics of what is DIY Diabetes Tech.
** Our most sincere thanks to Keith Garland Kieran and Tomas Mahony for setting up the video and sound recording.
ALL DIABETES IS Do-It-Yourself DIY
Well, firstly, Diabetogenic Renza and Bastian, hit the nail smack bang on the head when they said “All Diabetes is DIY” and we create our own solutions to our diabetes challenges every, single, day! We do diabetes all by ourselves all day, every day.
However, when we talk about DIY Diabetes Solutions we are really talking about people using their knowledge of technology to solve bigger diabetes problems such as:
“How can I see my child’s glucose information when I’m not in the same room?”
Or “Can I make the alarm on my CGM louder?
THE BIRTH OF DIY DIABETES SOLUTIONS:
NIGHTSCOUT AND CGM IN THE CLOUD
Back in 2006, people who used CGMs only had a receiver device to view the glucose information. If you were a parent of a child with diabetes this was extremely problematic because the receiver had to be close to the child at all times and there was a necessity for helicopter parenting. It also appeared that that the device makers were not listening or were taking too long to allow parents share this CGM with both parents.
Case in point - I recently watched Weston Nordgren’s presentation at TAD2016 whose wife went to the bathroom while Wes watched his young son play basketball. In the 5 minutes Mrs Nordgren was gone with the CGM receiver, Little Nordgren collapsed from a hypo that Weston didn’t even know was coming. Wes swore he never wanted to not see that coming again and they took matters into their own hands.
He found like minded parents online and they pooled their resources and knowledge of computer programming to find a way to pull information from CGM receivers and send it to phones or tablets. CGM in the Cloud, the Nightscout Foundation and the #WeAreNotWaiting movement was born.
CGM in the Cloud does not have anything to do with insulin delivery. It’s just an alternative method of viewing your glucose information.
A couple of years later, CGM device companies included this feature in their products in the form of a “follow” or “share” app. But at this point, Nightscout had evolved into a software platform where you could record all your diabetes information and the app would give you a prediction of where glucose levels were head and the user could make a more informed treatment decision. It also became a very good tool to to generate reports to help health professionals understand how you were really doing outside of a HbA1c.
See a collection of Photos from Keith Garland’s presentation at DIY Diabetes Technology Day in UDC on May 25th 2019.
THE NEXT PHASE - DIY OPEN ARTIFICIAL PANCREAS
This is when a person with diabetes meets a computer developer who asks questions that you have never considered before. Enter Dana Lewis and the young man she was dating, Scott Leibrand, who was new to type 1 diabetes would ask Dana why her insulin pump and her glucose sensor didn’t communicate with each other. Why did the person with diabetes have to be in the middle when a computer could do it better? The technology was there to do it so why wasn’t it available to people with diabetes?
Dana first created #DIYPS in December 2013 as a solution to make her own continuous glucose monitor (CGM) alarms louder. But they didn’t stop there!
They then created a predictive algorithm that forecasts glucose levels hours into the future and creates personalized recommendations for any necessary actions. Within a year, they realized that Dana would be able to “close the loop” and create a hybrid closed loop artificial pancreas system to automatically adjust an insulin pump’s basal insulin delivery to keep blood glucose (BG) in a safe range overnight and between meals, by using the basic algorithm from #DIYPS and pairing it with off-the-shelf hardware and other open source code and tools to communicate directly with her insulin pump.
“OpenAPS follows the same basic diabetes math that a person would do to calculate a needed adjustment to their BG – but it is automated and precise.”
As a community, Dana and the other developers decided that they would share this computer code as an Open Source.
“Open source software is software with source code that anyone can inspect, modify, and enhance. "Source code" is the part of software that most computer users don't ever see; it's the code computer programmers can manipulate to change how a piece of software—a "program" or "application"—works.”
DIY closed loop systems are available for free to people with diabetes but you have to build it yourself: it involves building an App and putting tiny pieces of computer bits together.
They are not approved devices and therefore can’t be endorsed by any of the diabetes organisations but thankfully a lot of diabetes organisations understand the significance of people doing this and how it has finally woken industry up to the fact that if they don’t figure this out someone else will before you.
#OpenAPS was created in February 2015, and the rest is history.
Here’s a collection of photos from Dana Lewis, Adrian Tappe, Katarina Braune and Shane O’Donnell:
HOW SAFE ARE COMPUTERS AT DELIVERING INSULIN?
I would argue that it is not any less safe than the regulated devices and that more people with diabetes end up in hospitals from severe hypos and DKA from insulin pumps and insulin pens as the brain makes a crap pancreas. The old school among the health professionals are very nervous of what they have difficulty understanding. They want to see peer reviewed clinical research on these systems. The problem with that is it takes time but the science is coming and there is a lot of data to support the claims that these systems are better than what we have available now.
THE RESEARCH
11 million hours of data has been collected from 1,300 users and it is being processed. This is the largest science experiment in the history of medicine.
in the meantime, OpenAPS are collaborating on a lot of research papers some of which have been published. Here is some reading:
Diabetes 2018 Jul - Closing The Loop With Openaps In People With Type 1 Diabetes—experience From Italy
Diabetes 2018 Jul; Improvements In A1c And Time-in-range In Diy Closed-loop (Openaps) Users Dana M. Lewis, Richard S. Swain And Thomas W. Donner
Real-world Use Of Open Source Artificial Pancreas Systems Dana Lewis,1 Scott Leibrand,1 And #Openaps Community
Example Projects That Are Using The Openaps Data Commons can be found here.