Nightscout — the Technology that Changed the World We Know
Editor’s Note: December 7, 2016, Pebble’s watch (the technology used by Nighscout) has recently been acquired by Fitbit and is no longer being manufactured and sold. Functionality remains for the watch; however, service quality may reduce in the future. Fitbit is aware of the Nightscout project and outcomes of this new acquisition have yet to be seen.
Meet James Wedding: husband and father to two girls, (one who has type 1), full-time software engineer, part-time tech collaborator with other parents of type 1 diabetes (T1D) children to create a database where continuous glucose monitor (CGM) data can be stored and accessed anytime, anywhere through a pebble watch or any other computer. They call it Nightscout. Pretty cool, right? If you haven’t heard of this group yet, be prepared that by the time you’re done reading this, you’ll have stood on the top of your chair and cheered from pure jubilation or excitement, because it truly is an inspiring story.
BT1: Does everyone at Nightscout have full-time jobs?
JW: Yes, there’s not a single full-time person on Nightscout. (We have one developer who volunteers full-time.)
BT1: When we explain to others about what your organization has done, we say that you’re essentially using cloud storage to connect CGM data to wearable devices, computers, tablets, or even televisions. Can you elaborate on this? How do you tell people about your service?
JW: Nightscout simply enables remote monitoring for anyone, anywhere as long as there is a data connection. It’s not just kids, lots of adults take advantage of Nightscout, because there’s a level of discretion. Looking at your watch or your phone isn’t as disruptive. It’s given a lot of people a new sense of power over diabetes. Whether it’s parents who can go out on a date and leave their child with a babysitter or an adult feeling more comfortable driving because he or she can just look down.
BT1: That seems not just helpful, but also really empowering. How did you get involved with this community?
JW: My daughter was diagnosed almost five years ago, and that changed everything for everyone when you go through it. I wasn’t as involved at the time with the T1D community, but then we discovered Nightscout and the Facebook group, and I found that I was able to contribute. (That was April of 2014.)
The first big “wow” moment for us was when our daughter went to Six Flags with the middle school band and we didn’t go. First time ever. We got some portion of our life back. That’s been just so rewarding to see quality of life improvements and see how much it has impacted other people. Our group of a few hundred turned into 15,000. Not everyone uses the technology, but people want to know what we’re doing. There was definitely a demand for this technology and then we gave it a venue. It’s crazy; I think it’s changed the way my wife and I interact with our child. I think it’s also changed the way doctors interact with their patients.
BT1: How so?
JW: Doctors are so overburdened with research and reports. We hear stories of people showing Nightscout to their doctor and diabetes educator and there are now commercial versions available, but that conversation is new. It came from a small group of like-minded developers and engineers, but it’s changed the way we manage diabetes.
BT1: How did you come up with this idea?
JW: Initial contacts were through social media, (Twitter specifically). John Costik posted a picture of a watch or spreadsheet. Someone saw the picture and asked the question. Jason Adams started the Facebook group, so more people could talk about it, and it just exploded. People brought different talents.
BT1: You have the motto #wearenotwaiting and it seems to be directed to technology companies. Why do you think it has taken so long to develop this kind of technology on a large scale?
JW: The commercial manufacturers of medical devices are working under certain restraints: financial, FDA approval, etc. Even in two years, the atmosphere around this sort of display of data has changed. The FDA has moved their perception of what is a “medical device”. Developers with no shareholders or profit motivation, they could knock it out in weeks whereas a for-profit would take months. It’s just a different set of requirements. Nightscout has benefited from playing just outside the rules, not way outside but just on the edge. That’s where the catalyst of the project came from. We had thousands of folks involved on Facebook and we decided to make this more than a Facebook group. We had a community and we wanted to leverage that community on a bigger scale. There are hundreds of great type 1 non-profits, but we decided, let’s focus on the technology, (remembering to protect people on the project).
BT1: How did you protect against personal liability?
JW: The first step was putting a corporate umbrella around some of this stuff. We are working and talking to folks about putting some general protective insurance over development. Those conversations are ongoing, so people feel comfortable sharing their ideas and their work.
BT1: Why did you choose to launch Nightscout on the pebble watch versus another wearable device?
JW: Pebble was a matter of that’s what worked. That was the smart watch that we could get the data onto. It was one of the only ones that had an easy-to-access interface and it was relatively inexpensive. Since then, Pebble has been a great partner.
BT1: What’s in the future for Nightscout?
JW: We want to keep spreading the word that we are “open source” technology out there that you can use. We want to expand our partnerships. In the last few months, things have really grown. Last year, the discussion was, “What are we going to do about this Nightscout thing?” Now it’s, “What else can we do to show that kind of innovation to affect immediate change?” It was a question mark and now it’s become a medical study. The foundation exists to enable other people to do great things.
We’re working on the creation of an open source research database, harnessing all this data that is being generated at a magnitude bigger than anything that has been collected previously in traditional research to date and working with other groups to then parse and analyze all this information. It’s about what we can do today and tomorrow, not five years from now. If we can figure out how to solve the pizza problem, we’ll do it.
BT1: Is that on the docket?
JW: No, but it’s sort of our running joke. I want to know how to bolus my kid for the pizza party problem at school. (There’s always a pizza party.)
BT1: So it’s about answering the day-to-day questions of people affected by type 1?
JW: We can answer these questions with big data. The impetus was giving people a piece of mind, and it has turned into “Wow, what else can do?” That has been the incredible thing. So many people have come back and said, “This has changed our lives, how can we pay it back?” The question is then, what opportunities can we create for people? Research is an easy one—share your data, let researchers use it and draw conclusions to big questions.
James Wedding is president and on the board of directors at Nightscout.
Want to know more about Nightscout? Visit HERE.