Tag Archives: blood glucose

Do It Yourself Diabetes

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Dana Lewis and Scott Leibrand are the creators of the amazing “Do-It-Yourself-Pancreas-System,” also known by #DIYPS. We had a few question for them.

Ernesto: Why build your own pancreas?

IMG_3561Dana: I’ve had Type 1 diabetes for about 12 years. I use an insulin pump and a continuous glucose monitor (CGM), but the devices are separate. They don’t talk to each other. I have to look at the data from the CGM and then make decisions about my insulin. I have to make about 300 decisions per day on average. It’s really fatiguing. So we created some algorithms that took my blood glucose data, the amount of insulin that I’ve given myself, and the amount of carbohydrates that I’ve decided that I’ve eaten, and ran them over and over again to give me a prediction of what my blood sugar was going to be and whether I need to take any action. Instead of having to constantly do the math myself, our system will push an alert to my phone or watch.

Ernesto: Does it dose you automatically?

Dana: Originally no, but more recently we’ve built a full closed loop version of #DIYPS, that is essentially an artificial pancreas, that talks to my pump and adjusts to give me a little more or a little less insulin.

Ernesto: Who writes the code?

Scott: I’m doing all the coding. I’m sure Dana could, but she has a lot going on and designs the algorithms. My title is Chief Spaghetti-Coder. This is the bleeding edge. It doesn’t need to be elegant code.

Ernesto: What have you learned from building your own pancreas?

Dana: The beauty of a CGM is that it gives you a data point every five minutes. Over the past year I’ve produced more than 130,000 data points of blood sugar levels alone. That gives me an incredible picture of what’s happening. With a traditional meter, it’s rare to find somebody who tests up to even 10 times a day. And the standard use for an insulin pump is very much “set it and forget it.” The #DIYPS allows me to customize without having to constantly adjust my insulin pump manually, and that frees me up to live my life, work, and do whatever it is that I want to do.

A visualization of Dana’s Data over the first year of the #DIYPS system.

A visualization of Dana’s Data over the first year of the #DIYPS system.

Ernesto: How did this project start?

Dana: We first started building the system just to make the alarms on the device louder, to wake me up because I would sleep through them. The device manufacturers didn’t seem to have a solution. Then we started looking at getting the data onto a computer so Scott would be able to view it. At the time, we had recently started dating, and he lives 20 miles away. I wanted him to be able to see what my blood glucose level was, so if it was low, he could text me; and if I didn’t respond, he could call 911. But we didn’t have a way to get the data off of the device.

Scott: The key moment was when we saw a tweet from John Costik, who was working on the Nightscout Project. Nightscout is open source code that helps people transmit their CGM data to other devices. I tweeted John right away: “Hey it would be awesome if we could get access to this code.” That’s really where it started. And along the way the whole process has been extremely public. We’ve been tweeting, blogging, and making everything we’ve been doing completely visible.

Ernesto: I’ve seen you tweet using the hashtag #wearenotwaiting. What does that mean?

Dana: #WeAreNotWaiting is a hashtag that was coined at a conference hosted by an online diabetes advocacy and information sharing community called DiabetesMine.com. For me it means that we’re not waiting for traditional device manufacturers to come out with the product. In three to ten years there’ll be devices like our artificial pancreas systems out in the market, being sold by companies approved by the FDA. I need to be alive when that system gets out in the market in, perhaps, five years.

I need to be alive when a cure becomes available.

Scott: Right about the time that we started working on #DIYPS, the Nightscout Project started to grow really quickly. There are now over 10,000 people in the CGM in the Cloud group. Over 2,000 people are using Nightscout to view their own or their loved ones’ blood sugar levels remotely on phones, watches, and other devices. This is real stuff that’s making a real difference in the world. And that’s only going to accelerate as more people do more interesting things like this closed loop that we’ve just done.

Ernesto: You’ve written about “data as free speech.” What do you mean? How can data be speech?

Dana: People often don’t understand why its legal for us to ‘hack’ a CGM and an insulin pump. (Note that hacking isn’t a negative thing; we’re just sharing the data across devices!) They assume that because all my DIY gadgets are not FDA-approved to use them the way I’m using them is somehow against the rules. But I can treat my own body, my own diabetes, the way I want to. And if I share my data, that’s obviously a kind of speech. But if we decide to share our code? I think the FDA sees this as a gray area. We very much want to continue our conversations with regulators.

Ernesto: Where do you see your project going?

Dana: I feel that every time I answer this question my answer changes, because my understanding of its potential is constantly changing. I never would have thought that any of what we’ve done was possible. Right now one of our goals is to make sure that the knowledge we gained about diabetes through our work with #DIYPS is adopted by clinicians, and that patients have access to this new information for treating diabetes. We’re also taking #DIYPS to a new level with #OpenAPS, an open and transparent effort to make safe and effective basic Artificial Pancreas System (APS) technology widely available to more quickly improve and save as many lives as possible and reduce the burden of Type 1 diabetes.

Dana with the #OpenAPS system.

Dana with the #OpenAPS system.

Scott: A few of months ago, at a conference convened by the advocacy group DiabetesMine, we got up and talked about our project, and I said: “I’m putting a stake in the ground that we’re going to make a closed loop artificial pancreas by August 1st, which is the date we’re getting married.” Everybody applauded and thought that was awesome. Then we went home. And we had it done in two weeks.

Dana: For anybody who wants to get involved in this, we would love to talk to you. There are so many people with diabetes and there is so much data that drives the management of this disease.

But there’s not a lot of awareness of how many diseases, including diabetes, could have their care revolutionized just by having better access to data.

That’s the thread of Quantified Self that I’m most interested in. The diabetes community happens to be one of the first to take advantage of what’s possible.

Dana tweeted her blood glucose data during this interview.

We invite you to share your data access stories, and this Access Conversation with the #qsaccess hashtag and follow along here in our Access Channel quantifiedself.com and @quantifiedself.

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Diabetes, Metabolism, and the Quantified Self

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This is a visualization of one month of my blood sugar readings from October 2012. I see that my control was generally good, with high blood sugars happening most often around midnight (at the top of the circle). -Doug Kanter

Richard Bernstein, an engineer with diabetes, pioneered home blood glucose monitoring. What he learned about himself contradicted the medical doctrine of his day, but Bernstein went on to become an MD himself, and established a thriving practice completely devoted to helping others with diabetes. We think of Dr. Bernstein as a hero because he used self-measurement to support his own learning, and shared what he learned for general benefit.

Tracking personal metabolism is a necessity for diabetics, and it is also something that will become increasingly common for many people who want to understand and improve their metabolism. Diabetics are also leading the fight for personal access to personal data, and we’re looking forward to meeting inspiring activists and toolmakers today at the DiabetesMine D-Data Exchange meeting in San Francisco. In honor of this meeting, we’ve put together an anthology of sort of QS Show&Tell talks about diabetes and metabolism data.

Jana Beck
Jana is a Type 1 diabetic and data visualization practitioner who has been working on creating new techniques for understanding that data from her Dexcom continuous blood glucose monitor. In this talk, she described some of her newest techniques and her ongoing work with Tidepool.org. You can also view her original QS show&tell talk here.

Doug Kanter
Doug has been featured here on the QS website many times. We first learned about Doug through his amazing visualizations of his own data (like the image above). At the 2013 QS Global Conference, Doug shared what he learned from tracking his diabetes, diet, activity, and other personal data and his ongoing work with the Databetes project.

We spoke with Doug about his experience with tracking, visualizing and understanding his diabetes data. You can listen to that below.

James Stout
James is a graduate student, professional cyclist, and a Type 1 diabetic. In this talk at the QS San Diego meetup group he talked a bit about how he manages his diabetes along with his near super human exercise schedule and how he uses his experience to inspire others. (Check out this great article he wrote for Ride Magazine.)

Brooks Kincaid
Brooks, a Type 1 diabetic, was tracking his blood glucose manually for years before switching to a continuous blood glucose meter. In this talk he describes what he’s learned from his data and why he prefers a modal day view.

Bob Troia
Bob tracked his fasting blood glucose, diet, and activity to find out what could help him lower his risk of developing type 2 diabetes.

Vivienne Ming
Vivienne’s son was diagnosed with Type 1 Diabetes two years ago and she’s applied her scientific and data analysis background to understand her son’s life.

Seth Roberts
Seth has a long history of tracking and experimenting with his metabolic data. In one of his last QS talks, he spoke about how alternate day fasting was impacting his blood sugar.

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Bob Troia: Understanding My Blood Glucose

Bob Troia was interested in his blood glucose. While he’s not a diabetic and he’s not out of range, he wanted to see if he could lower his fasting glucose levels. He started a long-term tracking experiment where he tested his blood glucose and began to explore the effects of supplementation and lifestyle factors. In this talk, presented at our 2014 Quantified Self Europe Conference, Bob talks about his experiment and what he learned from analyzing his data. Make sure to read his take on what he did, how he did it, and what he learned below.


You can also view the slides here [pdf].

We also asked Bob to answer the three prime questions:
What did you do?
After learning via my 23andMe results that I had an elevated risk for Type 2 diabetes (and having an interest in the longevity benefits of maintaining low blood glucose levels), I began tracking my daily fasting glucose and the effects that diet, exercise, supplements, and stress have on glucose levels so I could take whatever steps I needed to proactively understand, control, and optimize it.

How did you do it?
Over the course of 7 months, each morning I would take a fasting glucose reading using a handheld glucose meter. After establishing a 30-day baseline of daily fasting glucose readings, I began to take supplement called oxaloacetate. It’s been shown to lower and more tightly regulate fasting glucose by mimicking the effects of caloric restriction. It’s a naturally occurring compound found in lots of foods, such as spinach, potatoes, or apples, and it’s as safe as Vitamin C. After several weeks, there was a noticeable improvement in my average values! I then started looking at day-of-week trends in addition to how exercise (in my case, playing soccer) and other things such as travel affected my glucose.

What did you learn?
I learned that I could indeed improve and better stabilize my fasting glucose levels using oxaloacetate – but only in conjunction with intense, interval-type exercise like soccer. My average fasting glucose levels are highest on Mondays (stress of a new work week) and lowest on the weekends. Long airplane travel can adversely effect my glucose levels for several days. Surprisingly, alcohol consumption did not have an effect.

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Conference Preview: Bob Troia on Tracking Blood Glucose

We’ve learned a lot from the diabetics in our community, such as Jana Beck’s lessons from 100,000+ blood glucose readings, and Doug Kanter’s narrative visualizations of a year of his diabetes data. At the upcoming QS Europe Conference on May 10th and 11th in Amsterdam, we’re going to hear the interesting story of a non-diabetic who began tracking his fasting glucose to improve his health.

With the US Centers for Disease Control estimating that over a third of the US population shows signs of diabetes or pre-diabetes, it’s not surprising that the techniques of learning from blood glucose measurements are spreading more widely. After learning from his 23andMe profile that he had an elevated risk for developing Type 2 Diabetes, Bob Troia began tracking his fasting glucose daily while also tracking exercise, diet, and  experimenting with supplements. He’s been reporting the results on his blog, Quantified Bob. If you’re curious about how to apply these techniques in our own life, join as at the upcoming meeting, or keep an eye out for the video of Bob’s talk at the New York Quantified Self show&tell.

The 2014 Quantified Self Europe Conference is just a few weeks away. Please join us!

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Vivienne Ming on Tracking Her Son's Diabetes

Vivienne Ming is an accomplished neuroscientist and entrepreneur. When she’s not conducting research or working on new ideas she’s busy taking care of her son Felix. Two years ago Felix was diagnosed with Type 1 Diabetes. Vivienne and her partner tackled his diagnosis head on and started tracking everything they could. In this talk, presented at the 2013 Quantified Self Global Conference, Vivienne explains what they’re learning together.

We’ll be posting videos from our 2013 Global Conference during the next few months. If you’d like see talks like this in person we invite you to join us in Amsterdam for our 2014 Quantified Self Europe Conference on May 10 and 11th.

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What We Are Reading

We hope you enjoy these links, articles and other bits of interestingness we’ve found around the web over the last few weeks.

Taking the Guesswork out of Designing for Walkability by Xiongbing Jin & Fanis Grammenos: How should we design urban environments? In this article, the authors explore using agent-based modeling to test (a priori) what urban designs positively influence walking in a community.

The Quantified Brain of a Self-Tracking Neuroscientist by Susan Young: Russell Poldrack is a neuroscientist and imaging expert at the University of Texas. He’s currently in the middle of a massive self-tracking project which includes bi-weekly brain scans (MRI).

Blood Glucose Monitor Data Pushed to Smart Watch by Mike Szczys: This short post on the excellent Hackaday site introduces us to Don, an enterprising hardware hacker and diabetic. He’s spending some time attempting to send his blood glucose monitor data to his smartwatch and writing about it here.

Photo Lifelogging: Why I’m Skeptical by Peter Lewis: We’re moving quickly into a word with millions of wearable cameras. Peter, a QS meetup organizer, expounds on this trend and what what might happen when we’re all  able “ to censor — sorry, “curate” — [our] own photo streams.”

Home Tweet Home: A House with it’s own Voice on Twitter by Rachel Metz: The Internet of Things isn’t the future, it’s already here. Read about how Tom Coates has “wired” his home for constant data tracking and communication.

Personalized Medicine vs Guideline-based Medicine by Jeffrey Goldberger & Alfred Buxton: A short, but very interesting article that begins to explain the competing ideas behind the design and implementation of personalized vs guideline-based medicine.

Blood and Stories: How Genomics is Rewriting Race, Medicine, and Human History [pdf] by Priscilla Wald: “[If] we understand the power of the stories we can better understand the debates surrounding race and genomic medicine, which, in turn, can help us make better ethical and policy decisions and be useful in the practices of science and medicine.” (submitted by Whitney Erin Boesel)

(If you’re interested in more academic papers related to self-tracking and Quantified Self please join our Mendeley Group).

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Jana Beck on Learning from over 100,000 Blood Glucose Readings

Jana Beck was diagnosed with Type 1 diabetes when she was 19 years old and has been interested in tracking her health ever since. Last year when she received a continuous blood glucose monitor she decided to take a more active role in understand what was effecting her blood glucose levels and insulin dosing. Spurred by reading about carbohydrate restricted diets, she decided to see if she could see changes in her blood glucose readings and as a result of changing her diet. In this talk at the New York QS Meetup she describes exactly what she found and shares some really neat visualizations that help tell her story.

Jana Beck – Quantifying Diabetes: Lessons learned from 100,000+ blood glucose readings from Steven Dean on Vimeo.

You can read more about the last New York QS Meetup here. If you’re interested in using theses data visualizations with your own blood glucose data be sure to check our Jana’s iPancreas project on GitHub.

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