COMMENTARY

Open-Source Artificial Pancreas Technology Lifts the Burden of Type 1 Diabetes

Jason B. Wittmer, MD; Mark Harmel, MPH

Disclosures

October 25, 2018

My son was diagnosed with type 1 diabetes at age 3, and I knew that I needed to find a better way to control his disease to keep him safe and healthy. In 2016, I found the Open Artificial Pancreas System project (OpenAPS).

At that point, I wasn't able to keep him as safe and healthy as I wanted with the tools that I was finding from commercial device manufacturers. Using tools from this open-source project, I was able to build a hybrid closed-loop system, which has been transformational in terms of my son's control, safety, and quality of life.

'Diabetes Becomes an Afterthought'

It's not just about A1c outcomes; it's also about him being a normal teenager—being able to eat what he wants, go to jazz camp, be with his friends, and not worry about the burden of diabetes. The open-source artificial pancreas takes away the need to choose between quality of life and quality of glycemic control.

These tools aren't available from commercial devices at this point. In the open-source community, we've found ways to work with the tools that we have, use commonly available technology and open-source software, and take these benefits and extend them to other people.

We're passionately motivated to offer these tools to other people so that everyone can benefit from them and experience the success that we've had, and ultimately live happier, healthier, better-controlled lives where diabetes becomes an afterthought and not the focus of every last waking moment.

We have seen a significant improvement in the time burden of managing my son's disease. My wife is a nurse, and she pulled our son's data from fourth grade, before he started using OpenAPS. That year, he visited the nurse 420 times. About 300 of those were for routine blood sugar checks, but a significant number were for high or low blood sugar management.

After using OpenAPS, he visited the nurse only five times in a year. All of his other time was spent learning and in class. He wasn't different from his peers. He was able to focus on being a kid, not worrying about his diabetes.

Remote Monitoring and Control

When managing a child with diabetes, things don't always go the way that you hope. Sometimes my son forgets to bolus and sometimes he doesn't bolus enough, so you still need to provide some input. By using open-source tools, we're able to remotely monitor and influence the OpenAPS algorithm, make decisions to help his diabetes be less of a burden, and keep him safe and successful.

For example, when he forgets to bolus for a meal, I can remotely input those carbohydrates from my phone to allow the APS algorithm to dose and treat for that appropriately. He stays in class, his blood sugar normalizes quickly, and he's none the wiser—and I'm happy knowing that he's safe and effectively controlled.

Likewise, if he's going to have gym class and I know that his blood sugar is running a little on the low side that day, I can set a temporary target so that it targets a higher blood sugar, reduces the insulin that he gets, acknowledges that he's going to be more insulin sensitive, and makes those adjustments.

Again, this is all transparent to him, and it gives me a sense of safety and security knowing that I can watch and help when I need to. It ultimately reduces the burden of managing a very difficult disease.

Where to Find Information

If you are interested in doing this for yourself or your loved one, I would encourage you to look into OpenAPS. It's not for everybody and it requires a willingness to learn the material. You have to do it for yourself; nobody else can do it for you. But if you're interested, please look into it. It can be truly transformational in terms of controlling your diabetes or the diabetes of someone you love. It really is a life-changing experience.

You can learn about the two major do-it-yourself hybrid closed-loop systems at openaps.org or loopdocs.org. It's going to take some work and it'll seem overwhelming at first, but this is absolutely something that anybody can do. I knew nothing about computers before I started this and I was able to do it for myself. In the past 2 years since the community has come together, we have made it much easier.

Diabetes is a risky disease. OpenAPS is not a one-size-fits-all solution, but diabetes is a not a one-size-fits-all disease. Find out what the options are and make your own decisions. It has been absolutely transformational for us, and I hope that other people can enjoy these same results.

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