Journey into Continuous Glucose Monitoring Technology as a Parent

Editor's Notes

• #2: Hi I’m Anne Gentle and this is my story about taking action through technology when faced with a rather scary disease.
• #3: Welcome to Grace Hopper 2015, I’m Anne Gentle and I work at Rackspace on OpenStack. Today I’m telling my story as a parent of a Type I diabetic.
• #4: Tell Evan's story of getting diagnosed. How did you know? - pixie stick made him tired - two fasting blood tests - phone call, "you have to take Evan to the emergency room now" This is where we found out: People with insulin-dependent diabetes have to test their blood glucose and give themselves insulin injections or infusions via a pump 24 hours a day every day in order to stay alive. Too much insulin can result in seizures, comas, or death from hypoglycemia, or low glucose levels. Too little insulin leads to devastating kidney, heart, nerve, and eye damage from hyperglycemia, or high blood sugar.
• #5: 5 FINGER STICKS or 288 DATA POINTS? Dexcom collects data every five minutes so it gives a more steady picture of continuous monitoring. I was in denial about my son being a Type I diabetic, but we had to find out more.
• #6: What does our story lead to? In my case, denial, then action. We were familiar with the disease. We knew we could manage it with technology. I’m a mom with a lot of cloud resources I have access to, including Mongo DB with Object Rocket
• #7: I found a dad, also with a son named Evan, who decided to take action. He wrote Nightscout, a monitoring application that took data from the monitor onto an Android phone through USB. Now it has evolved to reading the REST API data directly from the cloud. Let’s look at how we can do that as citizen hackers.
• #8: Evan wears a sensor, it's injected about weekly and stuck on his stomach or arm. It collects data continuously from interstitial fluid. He calibrates using finger sticks for blood glucose levels at least twice a day instead of 5 times a day. I work in Open Source and found that there was a neat blend going on of proprietary technology fueling open source development and vice versa. Let’s look at the components.
• #9: We have: node.js on a cloud server that has all the credentials to gather data from Dexcom’s share API and then store in a MongoDB database for display with a node JS server You may be surprised that a parent and some code can make such a big difference, but with this disease burden the opportunity is huge and the motivation is high.
• #10: Well, in a way, this can lead to helicopter parenting at its worst. But I like to think of this as a great aggregator, an anonymizer for my son so that his data can be used to heal himself and others, not reveal. Kids can stay longer at preschool because parents can coach the teachers through the balancing act between juice and running around. My middle school son learns more about self-management because he has more information at his finger tips. What if we can show Congress that they should pass the Medicare CGM Access act to specify coverage continuous glucose monitoring devices?
• #11: So once we received our new Dexcom, I installed the open source project after they found they could track the data using a REST API.
• #12: Quote from Chief Engineer at Medtronic Lane Desborough = father to a diabetic son. They are making strides towards the artificial pancreas. But here’s the amazing thing. Just this August a couple created an artificial pancreas with a Raspberry Pi, CGM monitoring, and Nightscout. That is how the problem and solution are coming closer together. Go to diyps.org to find out more.
• #13: Open mHealth, http://www.openmhealth.org/, is creating free, open source standards for data so that developers can integrate data from separate streams. Imagine if my son wore a fitbit and his dexcom and fitbit data were integrated through a common standard so he could get a heads up that he was about to go low from exercise? That’s proactive data.
• #15: I hope that I have inspired you to look into open source, not wait for someone else to solve your data problems, and take a journey into something new.
• #16: Booth 1001
• #17: This is the last slide and must be included in the slide deck