Accessibility, Life Care Plan, Technology

Dana Lewis and the DIY Pancreas

 October 3, 2018

By  Deborah L Weiner Katz, OTR/L, CCM, CLCP

Necessity is the mother of invention. Dana Lewis created the “Do-It-Yourself Pancreas System” (#DYPS) as a solution to make her own continuous glucose monitor (CGM) alarms louder. If inventing technology that mimics the functions of an internal organ does not impress you, let’s just review what it takes to actually manage diabetes on any given day.

Start with tracking everything you eat. Check your blood glucose levels throughout the day. Do you know how many variables influence those levels? There is the food you eat, your activity level, how much sleep you are getting and your hormones.

For Dana Lewis, living with type 1 diabetes meant relying on diabetes technology, such as insulin pumps and continuous glucose monitors to help manage the disease. However, these devices have their shortcomings. Lewis’s ability to recognize their major flaws, combined with incredible resourcefulness, led to the creation of an artificial pancreas.

One of the flaws Lewis noticed was that, while her CHM would give her a reading of her blood glucose every 5 minutes, she would have to pull it from her pocket and press a button to see her numbers. This means having to pay constant attention. What happens when she goes to sleep? Have you ever set your alarm and been afraid you’d miss it and be late for work? You could lose your job! Lewis went to sleep every night fearing she would not wake up at all.

Her first mission was to create a louder alarm to alert her if her blood sugar had gone low. She needed to get the CGM data off of the device and onto her phone or laptop. This proved difficult. It wasn’t until she read a tweet from someone who had managed to get his son’s data off the CGM in real-time that she had a breakthrough. The man was willing to share his code with her, which changed everything.

The pancreas produces insulin, which breaks down glucose. People with diabetes do not produce enough insulin and therefore have to artificially monitor and regulate their glucose levels. Within one year, Lewis went from discovering how to make her CGM alarms louder to building a full hybrid closed loop artificial pancreas.

At first, she simply wanted to be able to send her CGM data to her boyfriend. She didn’t want him to be aware of every single alarm. She just wanted him to know if she stopped responding to them. Luckily, he never had to call 911 or race to her home but it wasn’t long after building the system that he was able to call her when her blood sugar dropped below 60 and she hadn’t woken up to the alarms.

With the data on her laptop, Lewis already had a button to notify her boyfriend when she had taken action on a low reading. She then added three more buttons to show him what action she was taking. Was she increasing insulin, decreasing inulin or eating carbohydrates? Then, she fine-tuned her system to log exactly how much insulin she was taking and how much she was eating. The more data she entered, her system could predict and give estimates of where her blood sugar would be 30, 60 or 90 minutes into the future. This predictive ability gave #DIYPS a significant edge over her old CGM, which only had alarm thresholds that would notify her after she overcorrected her glucose levels.

The greater significance of Dana’s ingenuity has been the DIY aspect of the system. Not only was she able to transfer #DIYPS to her smart watch but she has since gone on to spread this DIY approach to healthcare to the larger community of diabetics. This means spending less time throughout the day worrying about their blood sugar and more time living their lives while the system runs in the background, updating every few minutes and letting them know when to pay attention when something changes.


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