Kutter Callaway: Tell me about how you went from being Fuller’s director of IT for web and mobile to a product designer for Tidepool.
Matt Lumpkin: I was 10 years into my tenure at Fuller as a user experience designer making new digital products when diabetes blew my family’s life apart. The complexity and relentlessness of the burden of care that came with my youngest daughter’s diagnosis at one and a half years old were overwhelming. I learned that people with diabetes are always 10 minutes of inattention away from a coma. Run your blood sugar too low and risk brain injury or death. Run too high and you do cumulative damage to your organs, nerves, and eyes. As a designer and hardware hacker, I couldn’t accept the limitations and poor user experience I was seeing in all the tools we were given to deal with it.
Then I discovered Nightscout (a way to monitor my daughter’s blood sugar in real time from anywhere in the world) and Loop (a DIY, open source artificial pancreas system that checks blood sugar and adjusts insulin dosing every five minutes, 24-7) and the #WeAreNotWaiting community that produced them. For the first time I saw the kinds of tools I needed and the true power of solutions that come from the people living with the problem. When I learned about Tidepool’s project to take Loop through FDA approval and bring it to anyone who wants to use it, to give the same freedom and relief that we’ve experienced from it, I had to get involved.
KC: What are some of the key questions you ask when designing these kinds of devices?
ML: The idea of control and who’s driving and who owns the choice—who’s the agent or the actor—is the key question to ask when you’re making devices to solve problems for people. You have to ask yourself: Whose opinion matters? Who gets to count? So good user-driven designers want to start with the person living with the disease.
Last year I took part in something called Disrupt Diabetes, a design challenge hosted by Stanford Medical School. We started with a person with diabetes, and then I brought my own experience as a diabetes dad and as a designer, then we added a clinician, and started asking questions about how we might solve some of these problems. It was an amazing experience because it was really about recentering the design process on the people living with the disease. And the kinds of solutions we came up with were different from what’s currently on the market.
Loop came about through a very similar process several years before. Loop works on iOS to automate the endless process of managing diabetes. It was designed by a person named Nate Racklyeft who lives with Type 1 diabetes, and who was simply tired of waiting for pump companies to use the supercomputer that lives in his pocket to help him manage his disease. So, building on work others in the community had done to decode the pumps and make them remote controllable by one’s smartphone, he just made the tool he needed for himself. What the tool does is, every five minutes, it reads your glucose data from a body-worn sensor, keeps track of what carbs are on board, and then adjusts the amount of insulin the pump is giving you to steer you back into range. You can also set different target ranges for different times of day and different activities—all from your smartphone. I’ll never forget the first time we got it set up for my daughter Hazel. My wife and I sat on our bed, eyes glued to an iPad monitoring the system, weeping as we watched it adjust her insulin up and down all night, the job we had been doing for months. It was the first time we felt like we could relax since her diagnosis.
KC: What has been the most challenging part of designing this kind of technology?
ML: A little while ago I got a Facebook message from a high school classmate. It said, “Hey Matt, my 11-year-old was just diagnosed with Type 1. Someone told me you invented a system that is going to manage it for me. Can you give it to me now?” I was haunted by that request. I tried to explain, here’s the docs so you can read about it. But he’s not going to be able to make it. Even if he can get a pump, though it’s increasingly difficult to get this kind; setting it up, running it, troubleshooting it, is going to be beyond his reach. For now. So how do we get from an open source project to an FDA-regulated product you can download in the App Store? That’s where Tidepool comes in.
KC: What’s one example of how this kind of patient-driven nonprofit approach enables new avenues for developing digital therapeutics?
ML: We’ve released the notes from our FDA meetings on Tidepool.org, which are actually really informative if you want to hear about this new direction the FDA is thinking about for digital therapeutics. But one new avenue opened up by this patient-driven approach has to do with taking real-world data of people using the software in the wild. That is something entirely new. I would argue if you are looking for scientific rigor, study the data from the wild, provided that you can validate that the sample roughly correlates to the population, which we’re doing by comparing it with the T1D exchange data set. But study data from the wild—from people like my daughter, who go to events, who spill their drinks, who sneak strawberries from the refrigerator. If you can get real data from that kind of utilization, that’s a better data set.
KC: As both a designer and a person of faith, how do you measure the success of the tech products you are developing?
ML: The broader metric that we all might want to consider is, does it actually empower the person? When I was talking about this to my friend Dr. Miyoung Yoon Hammer, a medical family therapist and MFT faculty at Fuller, she said, “The most critical task for people working to negotiate a healthy relationship with a chronic disease is that of restoring agency and communion.” This idea of agency, of who is driving, who is in control, because the disease has already put you on your heels, and said, no, I’m in control of your life. And the path to long-term mental health with chronic disease is getting back a sense of that agency, both as an individual and as a community. That’s how I measure success. Do the people who use the things you make feel their power return to them? More than any other metric, if you are working in trying to create solutions for people living with disease, this might be one you want to consider.