Dana Lewis is the creator of #DIYPS, the Do-It-Yourself Pancreas System, and a founder of the #OpenAPS movement, which is an open and transparent effort to make safe and effective basic artificial pancreas technology more widely available. She blogs about her experience with DIY diabetes technology at www.DIYPS.org, and is most often found on Twitter at @DanaMLewis and uses the hashtags #DIYPS, #OpenAPS, and #WeAreNotWaiting to spur conversations around DIY diabetes innovations.
Improving diabetes technology is a lot like building a mountain bike.
(Stay with me here, I’ll explain!)
Originally, bicycle manufacturers used to make bikes for riding on flat surfaces. Some people wanted to ride their bikes down mountains for fun, but existing bikes weren’t too comfortable. (They didn’t have spring-based seats—ouch!) So, bikers started customizing and modifying the bikes they had. Eventually, bike manufacturers saw the demand and saw what kinds of solutions were successful, so they started building mountain bikes with the same features that the original mountain bikers had used.
If you’re familiar with Nightscout or have heard of OpenAPS, Tidepool, or anything else related to the “#WeAreNotWaiting” movement, you might see where this analogy is going. And for those who aren’t familiar, here’s what I mean.
The traditional device innovation pipeline is slower than most of us would like
Those of us who are fortunate to have access to devices to help us manage our diabetes (in addition to insulin) are very appreciative of this technology. However, as super-users who are using devices (meters, pumps, CGMs, or some combination of these) to make hundreds of decisions a day related to dosing a life-sustaining medication, we often see ways that these devices could be improved. Louder alarms; seeing data from multiple devices in one place; sharing data with loved ones in real-time; and dynamic alerts and alarms, to name a few. You probably have your own list of wishes for improving your medical devices. Hopefully, these features are coming soon from traditional device manufacturers. But a lot of us don’t want to wait any longer than we have to—and we’d rather “soon” be in a few weeks or months rather than years.
Social media enables innovation sharing
Thanks to social media, improving these types of devices with “DIY” (do it yourself) methods can spread knowledge very quickly, enabling more people to test these solutions and tweaks. Once someone finds a way to do something (say, read data off of a CGM) and is willing to share that information online, numerous people can develop further projects and tools as a result. In fact, that’s how both Nightscout (an open source, remote diabetes data sharing tool), and #DIYPS (my personal real-time alert and prediction system that turned into a closed loop) came to life. And, because each of those projects continued to be discussed online and shared freely, other people were able to join the projects and contribute their ideas and their work, and thus the innovation has continued. (This is in turn what lead to #OpenAPS, the open source artificial pancreas project!)
The industry (and FDA) are listening
Like the bike manufacturers saw the demand for mountain bikes, medical device manufacturers are seeing the demand for new features like louder alarms; remote data display; dynamic alerts; and data interoperability. The FDA is also aware of the needs of the community, in part thanks to the power of social media and the numerous people who are willing to share their work (and their time) openly. As a result, recent and future devices coming from the traditional innovation pipeline better fit the needs of more people with diabetes. It’s exciting to see these changes occurring more quickly, which helps make life with diabetes less of a challenge— much like riding downhill on a mountain bike rather than a road bike!