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DiabetesMine’s D-Data Exchange Features Do-It-Yourself Diabetes Technology and Calls for Better User Experiences

Updated: 8/14/21 6:00 amPublished: 12/21/15
By Adam BrownKelly Close

By Adam Brown and Kelly Close

DiabetesMine recently held its bi-annual D-Data Exchange, bringing together ~100 patient, industry, academic, and government attendees to discuss the state of diabetes data, patient-led do-it-yourself (DIY) innovation, and new diabetes apps and devices. As Tidepool CEO Howard Look summed it up during the concluding reception, “Things are moving really quickly.”

Two of the most critical takeaways from the conference were the clear pace of progress in the patient-led DIY community, as well as the focus on better user experiences with diabetes technology. Below are four of our top highlights from the conference!

1) Dr. Joyce Lee shared compelling evidence that Nightscout’s crowdsourced, DIY movement to remotely monitor CGM data has achieved an impressive trifecta: increasing use of CGM, improving quality of life, AND reducing A1c. The findings came from a recent University of Michigan-led survey of 1,276 members of the CGM in the Cloud Facebook group, aiming to understand how this patient-driven movement has impacted real-world diabetes care.

Some of the study’s key findings included:

  • ~20% of CGM in the Cloud members started on CGM as a result of Nightscout, and ~9% restarted CGM as a result of Nightscout.

  • 85% of people reported that the found the remote monitoring technology “extremely empowering.”

  • Switching to Nightscout led to meaningful A1c reductions (0.7%-1.2%, depending on the age group) pre- vs. post-Nightscout.

Said Dr. Lee: “This movement has REALLY found life.” This data not only demonstrates the value of Nightscout, but more broadly testifies to the value of remotely monitoring glucose data as a whole – an area that has seen great development this past year through other efforts as well, including Dexcom’s Share and G5 and Medtronic’s MiniMed Connect.

Dr. Joyce shared patient perspectives to underscore what Nightscout has meant to families:

  • “You guys rock!!!!!! Without you, life would suck…. Unable to thank you all enough for what you have done keep up the great work, you have changed the lives of many… thank you from the bottom of my heart.”

  • You guys are great!! I owe you many hours of sleep. You are the most amazing people the world has ever been graced with. I am forever indebted for what you have done. You all are heroes in our home and hearts.

  • “You are freaking fabulous and have changed my life for the much much better.”

2) Type 1 patient Chris Hannemann shared data from 83 days of his own OpenAPS artificial pancreas experience. Chris is one of 17 people around the world who are now using the do-it-yourself system for automating insulin delivery. Mr. Hannemann has seen a 13%-point improvement in his daily time-in-range (up to 83%), a 15 mg/dl decrease in daily average glucose (down to 129 mg/dl – equivalent to an A1c under 6%), and says he wakes up pretty much every morning at approximately 100 mg/dl. Amazing results considering his starting glucose numbers were excellent.

Dana Lewis (a diaTribe alum!), Scott Leibrand, and Ben West developed OpenAPS, a “hacked” together system for automating insulin delivery – it consists of a Medtronic insulin pump, a Dexcom CGM receiver, a raspberry pi device for running the software algorithm, a CareLink USB stick to enable communication to the pump, and a battery pack. The software includes codes for monitoring blood glucose values, predicting future values, and controlling pump commands. The website has more information about the DIY technology. As we understand it, the team is talking to the FDA and companies about offering it to more people with diabetes; of course, the hassle of carrying so many devices has to decline too! Medtronic’s MiniMed 670G is currently in a pivotal study, positioning it as the first closed-loop system on the US market in the next couple of years. 

3) Tidepool designer Sara Krugman shared the fascinating design process behind the dual-chamber iLet bionic pancreas’ user interface. When designing the menus, icons, and displays, her team talked to a group of bionic pancreas trial participants to understand their experience with the device, how they used it, and how they felt on the automated insulin+glucagon delivery system.

Sara provided an extremely valuable example of why even seemingly small details like font size matter, showing a slide with the words “DONE, Done, and done” written on it. The difference is immediately intuitive – YELLING, Telling, collaborating – and as a result, everything in the iLet’s user interface is in lower case font. 

We learned that the iLet is going with an eInk display (e.g., like an Amazon kindle), which is thinner, uses one quarter of the battery power, meets the end goals of the device, and achieves the desired user experience.

The user interface centers on taking quick action: alerts that pop up stimulate an immediate action on the spot (“No glucagon – replace”) instead of requiring someone to clear the alert and go into several menus. As Sara said, “The device is more of a partner in care. You don’t have to wrangle it.”

Her goal with the iLet’s user interface was to build a more integrated, holistic device experience: “This device is part of my body. I spend more time with it than my partner. It better feel more like me and respect my decision making.” For more on the iLet, see our initial coverage from Friends for Life in July. The device will hopefully be tested in Bionic Pancreas trials in late 2016.

4) Companion Medical’s CEO Sean Saint shared a few new design details and screenshots of the company’s in-development Bluetooth-enabled reusable insulin pen and paired bolus calculator app. The product hopes to bring some of the benefit of pumps to those taking injections – especially a dose history! Some key features of the pen include a one-year battery life without recharging, one-year data storage, automatic dose transfer if the pen and phone are separated and then come back in range, and temperature alarms if the insulin gets too hot or cold. We saw the latest version of the mobile app, which includes prominent insulin-on-board displayed on the home screen, a timeline of recent doses, and a bolus calculator. The app will also provide insulin dose reminders and reports for healthcare providers. There are no details on the FDA timeline or potential launch, though in May the company stated it would be submitting the pen to the FDA in the “near future.” Companion’s pen will be reusable, meaning patients will keep it for a year and load new insulin cartridges into it as needed. Notably, insulin company Lilly is an investor in Companion, which will hopefully translate to widespread access and compatibility with Humalog (and hopefully other insulins too). [Photo Credit: Companion Medical]

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About the authors

Adam Brown joined diaTribe in 2010 as a Summer Associate, became Managing Editor in 2011, and served as Senior Editor through 2019. Adam brings almost two decades of personal experience... Read the full bio »
Kelly L. Close is the founder and Chair of the Board of The diaTribe Foundation, a nonprofit dedicated to improving the lives of people living with diabetes and prediabetes, and... Read the full bio »