John Costik is a software engineer in New York who has a 4-year-old child with type 1 diabetes (T1D). In February 2013, his child's diabetes management changed from 12 small needle sticks per day to a new continuous glucose monitoring (CGM) device that takes readings every 5 minutes, but allows for remote CGM monitoring. There were no commercial applications to do so. Remote CGM monitoring allows parents to check their child's sensor blood sugar levels in real time wherever they are, whether their child is at school, at a friend's house, or even sleeping in another room overnight. But parents can get an even higher level of security.
So he hacked the system. Kostic created software that transmits CGM data to the internet so she can monitor her child's blood sugar levels in real time.
He then posted about his development on Twitter (now known as X). Another “diabetic father,” California engineer Lane Desborough, contacted me. The following year, he worked with Naylor and a community of developers to open source the code, naming it his Night Scout project.
Nightscout enabled real-time access to CGM data via personal websites (https://www.nightscout.info/) and long preceded the commercial development of apps that enabled remote monitoring of CGM data. did. This was the first major breakthrough by patients, for patients, that enabled a major change in diabetes management. First they developed open software for remote monitoring that others were using to build their own monitoring systems, then they created an automated insulin dosing device and a smartphone application. Many of these open source modalities are still preferred, even though commercial systems eventually emerged.
Costik's Twitter post brought more than real-time access to CGM data. This has grown into the Do-It-Yourself (DIY) digital diabetes movement, with the first his D-Data ExChange held in November 2013. An individual with a specific area of expertise (health professional, software designer, engineer) or someone personally affected by her T1D or professionally using diabetes technology to improve the lives of her T1D patients We met to brainstorm ways to do it. There, the hashtag #WeAreNotWaiting was coined by Desborough and the founders of his Tidepool, an automated insulin dosing application for the Apple Watch. The application became the first patient-driven project to receive clearance from the U.S. Food and Drug Administration (FDA) in January 2023. .
Meanwhile, Dana Lewis, who has T1D, also saw Kostic's tweet. She and her then-boyfriend and later husband, Scott Liebrand, said Ms. Lewis could not adjust the volume of her CGM or her alarm and that she had low blood sugar while she was sleeping. I was trying to address the issue of being at risk.
Lewis was able to create a DIY automated insulin dosing system using Costik's open source code.
In 2014, Dana and Scott met Ben West, a software developer who learned how to reverse engineer his insulin pump and automate its settings.
After working together for three months, they successfully connected all the components (CGM data, insulin pump) and created a closed-loop artificial pancreas system.
They sent CGM and insulin pump data to a Raspberry Pi in a system where the pump automatically paused insulin delivery at 30-minute intervals when blood sugar levels reached a certain low threshold. Raspberry Pi is a small, affordable computer. Its purpose is to: Reduces hypoglycemia. The source code was released as part of the Open Artificial Pancreas System project (OpenAPS).
The goal of this project was to make basic artificial pancreas system technology widely available to improve safety for T1D patients. Over time, algorithms have become more sophisticated, similar to how some commercially available automated insulin delivery systems operate today, such as predictive low-glucose insulin suspensions based on CGM trends and super microbolus (series (low-volume insulin administration) can now be automated.
The creation of OpenAPS was a technological advancement that enabled rapid customization, integration, and adaptation, and did not require years of rigorous testing and FDA approval.
In 2015, software engineer Nate Luckeyleft (who has T1D) and computer scientist Pete Schwamb (whose child, Riley, has diabetes) created another DIY automated insulin delivery system using OpenAPS code. This allows an iPhone app to become an interface for a DIY system called Loop.
Rackyleft was using Python code to automate the need for insulin. Schwamb created her Bluetooth bridge to CareLink wireless devices made by Medtronic Diabetes. He named his newly cloned device “RileyLink” after his daughter.
RileyLink sends radio frequency communications to and from the pump (originally Medtronic's MiniMed) and converts it to low-energy Bluetooth to communicate with an iPhone app where an automated insulin dosing algorithm resides. The Loop system was released to the open source community in October 2016 and worked with any pump.
Loop creates predictions of changes in blood sugar levels and automation of insulin dosing depending on CGM data and user-entered information about carbohydrate intake. Loop has filled a huge gap in the world of diabetes technology. Diabetics can now create their own app to automate insulin dosing using their preferred pump technology. Loops also allow for further fine-tuning of insulin settings within the algorithm, such as personal glucose target ranges, personalized correction targets, and insulin discontinuation thresholds, allowing for customization to suit individual needs. Masu.
When used with Nightscout and Loop, you can monitor not only CGM data but also insulin pump data, allowing you to see insulin doses and responses to those doses in real time, making it easier to visualize and understand for people with diabetes and their caregivers. You will be able to do it. data. This also makes it easier for clinicians to access patients' diabetes data in real time.
In November 2016, the Facebook group “Looped” was launched to connect diabetics interested in using Loop. The group also included patients with diabetes. Parents of children with diabetes. So are clinicians, diabetes educators, and others who want to learn more about how DIY systems work. The group has grown dramatically, surpassing his 32,100 members in early 2024.
In September 2018, another online group, Loop and Learn, was established to serve as community-based support for users of DIY automated insulin dosing systems.
The rapid adoption of this type of system among the general public by a small number of people with chronic illnesses was unprecedented.
This move also laid the foundation for interoperable devices, allowing individuals to choose the CGM or pump that best suits their situation, and allowing both devices to work together even if the company that manufactured the device did not create this integration. enabled them to communicate with each other. The FDA approved Dexcom G6 in March 2018 as the first fully interoperable CGM system.
The DIY diabetes movement highlights what a small group of people living with a lifelong chronic illness can accomplish when they connect with each other and share their insights. Open sourcing the code makes it accessible to the broader diabetes community, allowing people to have an automated insulin dosing system long before a commercially available device is available. became.
There are now many online communities dedicated to connecting people with chronic illnesses, and these connections have the potential to spark widespread change nationally and internationally. The #WeAreNotWaiting movement is just one example of how a small number of people affected by T1D are leveraging social media to make a big difference in diabetes management.