Welcome to JDRF Bay Area’s blog, One on 1, a series of interviews with people who live with T1D. Members of the community will talk about how T1D affects them, how they manage it and how they have conquered it. We caught up with Brandon Arbiter, Vice President of Product and Business Development at Tidepool, a non-profit software development organization focused on making T1D data more accessible:

JDRF Bay Area: When were you diagnosed with T1D? How has your outlook changed over the years?

Brandon: I started feeling it just after I’d turned 27 years old, that was in February 2011. The onset was gradual. I was extremely thirsty; I even put a water cooler on my desk at work! I finally got into the doctor in July. That’s when I was misdiagnosed with type 2 diabetes. It took another dangerous and scary five months to learn what was really happening.

When I did finally get my diagnosis as T1D, my care team told me right away that I was going to be fine. I had done nothing to cause it, and I could have done nothing to prevent it. But more importantly, that there was nothing in life I wouldn’t be able to do as a result of it. I just needed to learn the basics of insulin and then I’d go back to normal routine. After so many months of knowing something was wrong, my diagnosis turned out to be a huge relief. Diabetes had been a mystery. Now it was something I could study, learn, and solve.

Back then, I felt very alone. I didn’t know anyone else with T1D. My family was across the country 3,000 miles away. I scoured the web for software and found nothing useful. If I was going to make this any easier, it was all on me.

But now, I don’t feel that way anymore. I know I’m not alone. The T1D community is vibrant, active, and supportive. After the first twelve months of living with T1D I’d found hundreds of people around the world hacking their devices and making use of their data. Today, that community has become mainstream through the #WeAreNotWaiting movement. They’ve had a tremendous influence on regulatory bodies and device makers. It’s incredible to see how much has transpired in such a short time.

JDRF Bay Area: How can software help people manage their T1D? What differentiates Tidepool?

Brandon: We use our smartphones to manage all the most important parts of our lives. Our communication with our loved ones. Our schedules. Our transportation. Our photos and music. Our work. Our shopping. Even our dating lives are now on our mobile phones! But for some of us, there’s one glaring part of our lives that requires constant management and is noticeably missing from the list of things our smartphones help us with: T1d.

It’s hard to say how software will help manage T1D. It’s a little like someone in 1980 asking what is the internet going to be used for. All we know is that it will change everything.

Historically, software innovation for T1D had been stifled. But that’s all changing now. The FDA has updated its guidance on mobile diabetes software, enabling more developers to contribute meaningfully in the space. Meanwhile, Dexcom, Tandem, Insulet, Abbott, Asante, and Tidepool have all said loud and clear that patients own their own data. Tidepool is working with each of these device makers to give people with T1D a practical way to get their data off these devices and into the cloud. Dexcom has gone a step further by implementing a direct Bluetooth-to-smartphone connection. I’m hoping all device makers follow suit.

But even with these device makers on board, the reality is that their priority is making great hardware. That’s what they should focus on. Tidepool’s unique role in this ecosystem is to provide a safe harbor for the data, where people with diabetes truly own it.

At Tidepool, we are stewards of your data, and we’ll make sure it goes into whatever app you want. We’re here to facilitate interoperability and ensure choice for people affected by T1D.

JDRF Bay Area: Tell us about “nutshell,” the app you developed to help people manage their T1D.

Brandon: Nutshell is an example of the power of diabetes device data. Imagine you walk into a restaurant. Your smartphone has GPS built in – it knows where you are (Seriously, it does!) Take that a few steps further.

What if your smartphone could remember the last time you were at this restaurant? And what if it also remembered how much you bolused and what happened to your blood glucose?

This is real. This is Nutshell. It provides situational recall for any situation – food, exercise, illness. It takes manual logging out of diabetes and it puts your device data to work in a highly personal, highly relevant way.

JDRF Bay Area: What should we look forward to in the expanding role of software in T1D management?

Brandon: Software is helping us become smarter and more aware.

People are starting to experience glanceable glucose displays! It’s on our wristwatches and on our walls, updated in real time. Still, most people with diabetes plunge a needle into our fingers, draw blood, and carefully apply it to tiny strip, then wait 5 more seconds just to see a single blood glucose reading. This sounds crazy by comparison. Imagine if you wanted to know what time it is, and in order to do that you had to draw blood! With CGMs, bluetooth and cloud technologies, we’re well on our way from Stonehenge to the atomic clock.

We also have realizations every day about our insulin management. I might realize that my basal rate in the afternoon is too low, or what the perfect correction factor is in the morning. Or exactly how to bolus for my favorite burrito. But too often, these realizations are fleeting. As quickly as we learn them, we forget them. Our doctors might tell us to write them down, or our loved ones might tell us just to eat fewer carbs! But if we have access to our data, each of our realizations will be waiting for us when we get home or go to our next doctor’s appointment. We can learn from our experiences and get better over time. We can add our new knowledge to our insulin therapy regimen and improve our A1Cs.

But that’s just the beginning! As all this data comes into the cloud, we can apply pattern recognition and find trends we didn’t even know were there! We can compare your sensitivity factors and carb ratios to other people in the world who have a similar metabolic profile as you. We can show you how other people bolus for the margherita pizza at CPK and what they learned from it.

Then, as we collect this big data, we can use it improve artificial pancreas algorithms. And we can give it to people who are researching better insulins or even looking for a cure.

JDRF Bay Area: What do you want people to know about T1D?

Brandon: I’ve said for a couple years now that I’m probably the only person with T1D who thinks it’s fun. So, I want people to know that it can be. Beautiful, creative software can turn this chronic condition into a (almost) delightful and engaging part of life.

JDRF Bay Area: What would a cure mean to you?

Brandon: When we find the cure, I’ll have to get a new job. So I have mixed feelings. Just kidding!