For Patients, by Patients: How the Open-Source Diabetes Software Movement is Pioneering a New Approach in Med-tech Design and Regulation
I was ten years into a career 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 1.5 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. And 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 sourced, 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 true power of solutions that come from the people living with the problem. When I learned about the 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. Now we are taking an open source software through regulatory approval and using real-life user data from the DIY community for our clinical trial in a process that is turning heads in the industry. We'll get into the many ways this story demonstrates ways that user driven design, open source models and a counterculturally collaborative approach with regulators are shifting the incentives and changing the landscape toward one more favorable to innovation.
Matt Lumpkin is a restlessly creative person. His career has been focused on UX design and digital product strategy. His youngest daughter's diagnosis with type 1 diabetes sent him down the path of questioning why medtech design was so poor (hint: it's designed for the wrong stakeholders with the wrong incentives). He has won design awards from Stanford Med School and IDEO for his work on bgAWARE redesigning glucose monitor alerts as a haptic wearable. He consults on medtech design at carabiner.us He lives in Pasadena with his wife and three daughters who proudly attend public school. He is a Product Designer at Tidepool.org.