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Living with type 1 diabetes means making decisions about technology all the time. Continuous glucose monitors, insulin pumps, and automated insulin delivery systems can change how people manage T1D, but the process of finding the right technology looks different for everyone.
For some people, having more flexibility and choice in their diabetes technology is important. That’s where open source automated insulin delivery, or open source AID, comes in.
Theresa Hastings has lived with type 1 diabetes since 1998 and serves on the Nightscout Foundation board. Her path into the open source diabetes community started with something many people with T1D know well: feeling alone.
We recently talked with Theresa on Around the Circle: Living Well with T1D about finding community, how open source AID works, what people should know before considering it, and why having more choices in diabetes technology matters.
The information in this episode is for educational purposes only. It is not medical advice, and we are not endorsing any system or product. Many community-built open-source AID systems—sometimes called DIY looping—have not been reviewed or authorized by the FDA as complete systems, even when they use FDA-cleared devices. Using one requires ongoing responsibility for setup, maintenance, troubleshooting, and safety. Talk with your healthcare team before making changes to your diabetes care.
Finding community through type 1 diabetes
Theresa was 15 when she was diagnosed with type 1 diabetes. For the first half of her life with T1D, she didn’t know anyone else who had it. She describes that feeling of being alone as one of the primary reasons she experienced cycles of diabetes burnout. That changed when she connected with another woman with type 1 diabetes through a Facebook moms group. That connection eventually introduced her to Diabetes Sisters, where she found a community of people who understood what living with diabetes was like.
Later, she found that same sense of connection in the open source diabetes community. But there was something else that stood out to her. These were people who weren’t just sharing the burden of diabetes, but rather they were also looking for solutions to the problems people with T1D were experiencing. For Theresa, that combination of community and problem-solving provided hope.
What is open source automated insulin delivery?
Automated insulin delivery, or AID, uses three main components: a continuous glucose monitor, an insulin pump, and an algorithm. The CGM provides glucose information, the pump delivers insulin, and the algorithm uses that information, along with the pump’s settings, to determine insulin dosing. Commercial AID systems use proprietary algorithms, meaning the calculations aren’t publicly available. Open source AID takes a different approach. The algorithms are publicly accessible, allowing people to review them, use them, and develop new ideas from them.
The CGMs and pumps themselves are not altered–the difference is the algorithm.
How Theresa discovered open source AID
Theresa first learned about automated insulin delivery from Melissa Lee during a Diabetes Sisters leadership retreat. At the time, the idea of an insulin pump and CGM communicating with a small computer to automatically adjust insulin was completely new to her. She was fascinated, but also intimidated. She didn’t consider herself particularly tech-savvy, and building a system herself felt like a lot to take on. About a year later, after a frightening episode of low blood sugar while her husband was traveling, Theresa decided to take the next step. Gail deVore, one of the founding members of The Nightscout Foundation, helped her learn how to build Loop.
For Theresa, the experience showed her that there was a tool that might make living with diabetes better, and that fear was the main thing holding her back.
More choice also means more responsibility
Commercial AID systems have advanced significantly since Theresa started using open source technology. Still, some people choose open source AID because they want more choice, flexibility, or customization. But that choice comes with responsibility.
People using open source systems need to be prepared to learn how their system works, maintain it, troubleshoot problems, and seek out information when they need help. There isn’t a customer support phone number like there is with a commercial product. Instead, people rely on documentation, educational resources, Facebook groups, Discord communities, and volunteers who help other users. Theresa describes the open source community with a phrase she likes: “Do it yourself does not mean do it alone.” At the same time, she emphasizes that community members aren’t medical professionals and aren’t providing medical advice. They’re sharing their experiences and helping others understand the technology.
How to learn about open source AID
If you’re curious about open source AID, Theresa recommends taking a look at the many valuable resources available online to learn more. You can read online about the different systems, watch educational videos from resources such as Loop and Learn, and spend time in established communities on Facebook to learn from other users. LoopDocs is a great resource to start with!
Theresa also talked about how established projects such as Loop, Trio, and Android APS approach development, including review and testing of changes before they are released. That community development process is different from formal regulatory review. Community-built open source AID systems have not been reviewed or authorized by the FDA as complete systems, even when they use FDA-cleared devices. Anyone considering an open source system should talk with their healthcare team before making changes to their diabetes care.
Finding what works for you
Theresa’s message isn’t that everyone with type 1 diabetes should use open source technology. Some people may value the flexibility of an open source system. Others may prefer a commercial system and its support structure. There is no single technology choice that works for everyone.
For Theresa, what matters is giving people with diabetes more choices and helping them spend less time thinking about diabetes. The open source community shares its work with researchers and industry as well, creating opportunities for ideas developed by people with diabetes to influence the broader diabetes technology community.
You don’t have to navigate T1D alone
Theresa’s story is about technology, but it’s also about community. Finding people who understand life with type 1 diabetes can make the burden feel less isolating. Finding people who are also looking for solutions can provide hope and new possibilities.
At Blue Circle Health, we know that people with type 1 diabetes need support that fits their lives. Our free clinical care, education, and support program for adults with T1D works alongside your existing care team and creates an individualized plan based on your needs.
If you’re eligible, you can sign up for free care. You can also share your story to help us better understand what life with T1D looks like for people in our community.
