I had the great opportunity to speak with John Costik, one of the many dedicated contributors, to CGM (Continuous Glucose Monitor) in the Cloud. To explain what CGM in the Cloud is in one sentence is impossible to capture. From the mechanical and program side, their Facebook page explains that it’s “an open source solution to send data (blood glucose information) from the Dexcom G4 to the cloud so that is can be accessed anywhere.” Anywhere? Yes. You can see blood glucose trending data anywhere with an internet connection and or cell phone coverage with the proper devices and open source software.
There have been many different programs that show BG (blood glucose) graphs and patterns, but that is where we need to separate CGM in the Cloud from the rest. CGM in the Cloud is more than BG numbers being displayed on a smart watch remotely—CGM in the Cloud is a group of highly supportive, like-minded individuals helping one another achieve a sense of normalcy with diabetes. I’ve personally seen the inspiring support from their Facebook group that has gained over 5,800 new members in a short period of time. Every day, you can read many stories from members explaining how this technology has improved their lives.
But let me tell you the story of John Costik, a real life coding super hero with the mission of getting their family’s freedom back from diabetes.
When John’s son Evan was diagnosed with type 1 diabetes at the age of 4, their lives changed. Diabetes became consuming, scary, and challenging. But what diabetes didn’t know was that it had been thrown into a close family of tech savvy engineers. Both John and his wife, Laura, are engineers by trade.
In February of 2013, a few months after Evan’s diagnosis, Evan started working with the Dexcom G4 CGM and a flurry of diabetes data was at John’s finger tips. Within a few short days of using the device, John had coded a simple uploader to extract the BG data from the CGM to a simple Google spreadsheet that he could review with his wife. Two weeks after that, they had an app built for Apple iOS and a webview that the daycare nurse could use.
It was an eye-opening experience for John and Laura to be able to monitor their son’s BG numbers. For some parents that would be enough, but Evan was starting school in a few months, and they knew this was going to be a challenging time to manage Evan’s diabetes. Maintaining normalcy at school for Evan became a top priority.
In April of 2013, John continued on with his diabetes cloud solution and purchased an Android smart phone for the sole purpose of diabetes hacking. With the start of school approaching, John took a family medical leave from his employer so he could help his son transition into a new school year and make sure his numbers were stable. John said to me, “My employer was very supportive with the work leave, which allowed me to focus on our family making the overall situation less stressful.”
John said that eight months after Evan’s diagnosis, they sometimes felt burned out as the family adjusted to the new routine. But John persevered, trying to figure out a way to sync the Dexcom G4 to his newly purchased Android device.
On May 14, John had successfully managed to sync both devices together. But this was simple coding and needed additional input and testing. As John and his wife tested the devices workability at home and on dinner dates, they teamed up closely with Evan’s daycare provider. Evan’s daycare provider gave feedback on the setup that would be helpful in the daycare setting. This was all in preparation for Evan’s first day at school.
In July, a new smart watch, the Pebble, was launched. For most techie enthusiasts, this device was a nice showoff piece tech-jewelry. But for John, this was a must-have device for diabetes freedom. John had preordered the Pebble watch well in advance to make sure he would have it on his doorstep in time. But when the launch day came, John realized he didn’t feel like waiting for the device to ship, instead he went to his local electronics store early in the morning and was one of the first out the door with a brand new Pebble.
So John rested for few days to catch his breath—wait, that’s not what happened. Heroes get to work, and by bedtime that day, John had written code for the watch that displayed Evan’s BG information. It showed Evan’s most recent BG number, the time, and an arrow showing the trend of his is BGs. I think John then went to bed that night, but I could not confirm.
- By linking their sons CGM, mobile device, app, and software, it made it so John and his wife became more intimate with their son’s diabetes data.
Evan entered the school year in which John worked closely with school and nurse. He even attended Evan’s school to remotely monitor his numbers and make sure everything was working as it should. John received input from the school nurse who mentioned that it would valuable if she could enter in additional information into to the Google documents. She said it would be great to also see a high and low line so she could recognize more easily when Evan was in need of assistance. So John added those features along with colors to make the information be recognizable at a glance.
Evan’s first year at school was a success. Evan’s BG average during the school year was 115 mg/dl and he had only one BG reading below 60 mg/dl. Whether in the honeymoon phase or not, these are great numbers and the hard work paid off. So who do you share this diabetes success with?
In August 2013, John started reaching out on social networks to find other like-minded folks interested in open source code for diabetes devices. He had already been talking with diabetes software hero Lane Desborough for several months. Lane had created his BG graphing and predictive alarm software called Nightscout. John shared the uploading code he had written for the Dexcom G4 to Andriod device with Lane. By sharing this information, for the first time they had a windows uploader code that was running locally. John speaks very highly of Lane and the other valuable contributors to CGM in the Cloud. There is no ego here, just people volunteering their knowledge to help solve common problem.
Lane recently gave a presentation at a Quantified Self meet-up in July 2014. Lane mentioned after testing this combination of apps and software, “In a few weeks Nightscout (combined with John’s uploading code) had matured to the point where it was an effective, reliable, system for us to remotely monitor Hayden’s (Lane’s son) diabetes.” Lane also stated in this presentation that, “Nightscout makes you smarter about your diabetes…it helps transform diabetes from a mystery to a puzzle. It’s not something you can buy; it’s open source software published on the web. There is no owner of Nightscout—just a bunch of people (volunteering) contributing their time and effort,” Lane said.
During August and September of 2013, John had collaborated and shared his working CGM in the Cloud with the connected developers and a select few. The code and software was never shared openly. “Lane convinced me that making the code open source was the path to take,” John said. Because of this open sharing mission and positive impact CGM in the Cloud had on John he said convincingly, “It changed our lives and we soldiered on!”
One year later after John created his first simple CGM uploading code in February 2014, John and other collaborators decided to make all the coding and software open sourced in a nice package available to all. And in March 2014, the Pebble and Android app became available through GitHub.
Once the buzz caught on there was initial excitement and peace of mind from others using the code. Websites launched helping others with the process of setting up the devices and code working together. Video guides were created to walk people through the setup, and Jason Adams, the visionary who coined the term “CGM in the Cloud, set up a Facebook page for people to connect. Membership of this Facebook group have have doubled every month to the point of 5,800 at the time of this article.
Topics on the Facebook page range from people trying to set up the devices for the first time, to what is the best phone to use, what is the best data plan to use, and where people can find the best deals on cases that can link the devices together. Someone has even uploaded 3D printing schematics for a case that holds both an Android phone and Dexcom CGM.
The CGM in the Cloud Facebook page is where everyone is a hero. You don’t need to have coding skills like John to provide valuable input. Maybe your ability to provide emotional support is your superhero power. All of the group’s superpowers are on display every day, and fulfills purpose in so many people.
During my interview with John he said to me, “I just want to play with my kids, not hack diabetes devices. I was trying the best way I knew how to get our family back to the way it was before our son’s diagnosis with type 1 diabetes.”
And isn’t that what all parents with children with type 1 diabetes really want? Thank you John for your time and knowledge and thank you to the many wonderful volunteers that have helped in this CGM to the Cloud movement.