Dear Machines: You Can Have This Job -- One Patient’s Experience With An OpenAPS Artificial Pancreas System
Every 5 minutes, a medical device analyzes real-time physiological data about me, reviews historical data and time-dependent settings, calculates an appropriate response and then injects a precise amount of medicine into my abdomen. This medical device isn’t a polished consumer product like you might see from GE or Philips; it’s a do-it-yourself assortment of existing medical devices, a small computer, an old cell phone, and a battery pack, all crammed into a rock-climbing chalk bag slung over my shoulder.
“PiPan” (short for “RaspberryPi-Pancreas”), as I affectionately call it, is the artificial pancreas that I have been using for the past four months and would like to share a bit of my story with you.
I’m a member of a small (but rapidly growing) community of people with type 1 diabetes (T1D) using open-source software and off-the-shelf hardware to enable closed-source medical devices to communicate with each other. The system looks hacked together, takes a lot of time to build and test, and isn’t incredibly user-friendly…but the ~80 people using it (as of June 2016) around the world are helping to greatly improve their or their children’s quality of life, lessening fear caused by the disease and helping to disrupt ideas of what healthcare might mean in the digital age.
Living with Type 1 Diabetes
Insulin, carbohydrates, fat, protein, fiber, exercise, sleep, stress levels and illness all have an effect on blood glucose levels. It’s a complex equation full of nonlinear, interdependent variables acting within a highly variable biological system (the human body). Controlling blood glucose might be compared to trying to drive your car at a constant speed on a mountain road without cruise control…in a car where your speed an hour ago affects your current speed, you can only glance at the speedometer once every 5 minutes and touching the brakes doesn’t slow you down for 20 minutes!
High blood glucose levels make you feel sluggish, irritable, or zoned out. Over time, sustained high blood glucose levels can lead to vision problems and blindness, infections that frequently lead to toe, foot or leg amputations, and kidney failure. On the other hand, low blood glucose levels can have even more serious short-term consequences. It can start with confusion, clumsiness, or reduced decision-making capacity (kind of like being drunk, minus any of the fun), and if left untreated for even a few hours, seizures, coma and even death might occur.
A person with type 1 diabetes walks a figurative tightrope all day, every single day. You need to manage all of the variables listed above to try to keep blood glucose levels consistently low enough to avoid debilitating long-term complications while not dipping so low as to put yourself in a dangerous situation in the immediate future. This is tedious, fatiguing and errorprone, at best. Doesn’t this sound like the kind of job better suited to a machine than a human?
Path to an Artificial Pancreas
Consumer insulin pumps, released about 30 years ago, enabled precise delivery of insulin nearly continuously, as a normal pancreas does. These pumps were a huge step up from injections with syringes two to three times a day. The human still had to gather data with a drop of blood from the finger and make a decision, but the pump allowed for much better diabetes control. An insulin pump is the “output” portion of an artificial pancreas; it acts on the decision being made. The process looks a bit like this:
So…is it safe?
Safety is hands down the single greatest concern of everyone working on the artificial pancreas. Everyone working on the project I am involved with either has type 1 diabetes themselves or is building the system for a close friend or family member; the responsibility of what they’re undertaking is considerable. Why? If it’s possible for a type 1 diabetic to survive without an artificial pancreas, why put one together?
The answer, for me, is three-fold:
- I know my disease better than anyone else ever will and I should be given the opportunity to manage it in the way that I know is best. I am able to track results in real-time and modify parameters as necessary, thus focusing my limited time and mental energy where it counts. Ironically, although I’ve handed over the management of a lot of my daily diabetes decisions to a machine, I own my disease and the management of it more now than I ever have before. And that is the way that it should be.
- I’m tired of waiting. Make no mistake, I understand how naive and entitled this sounds. I have been an aerospace engineer for over a decade, so I’m familiar with the delicate balancing act of making big changes in high-momentum industries where lives literally hang in the balance. I also realize how lucky I am; not only is this disease manageable, but I’m lucky enough to have the means to control it in the best way possible. Many have it much worse than I do, and I certainly don’t deserve anything more than anyone else.
But, with that said, I’ve lived with diabetes for more than 30 years, or about 90 percent of my entire life. I’m tired of worrying about an out-of-range blood glucose ruining some big experience or opportunity for me. I’m tired of not wanting to tell my wife about a low blood glucose I had on my bike commute, because I know that she worries. I’m tired of wondering if I’ll be healthy enough (or even around) for my kids as they grow up.
- Intelligent, creative, caring people are dedicating themselves to solving huge problems using the collective mind, resources and tools of the community. Medical innovations are the focus for an expanding group of people, including computer programmers, engineers and others who want to help in any way that they can. These people are interested in making life better for those dealing with chronic conditions such as diabetes. Their individual skills and talents are providing competition for traditional researchers and, in turn, causing both regulatory agencies and multinational corporations to rethink their approach to healthcare.
Anyone with a willingness to ask questions and a desire to learn can be empowered to make a better life for themselves and for others…in medicine and beyond.
Editor’s Note: This article was originally published in its entirety here: http://labs.teague.com/?p=2035