On the Importance of Patient Empowerment and Open Source: A Medicine X panel Weighs In

Jennifer Huber | Stanford Medicine News | September 16, 2016

It’s your body, so you should have access to all of your medical data, right? This morning at the Medicine X session on data and devices, I learned that liberating your own medical data — or devices — will probably not be so simple. The conversation was started by Ben West, a software engineer and co-founder of the Nightscout Project, which supports the creation of open-source technology for people with Type 1 diabetes. He explained that he was given two computers when he was diagnosed with Type 1 diabetes 12 years ago: an insulin pump and a device that tells him how much insulin to take.

“These devices are literally in or on our bodies, so my relationship with these devices is extremely personal and intimate. And that’s true for many other patients,” he said. “But computers are programmed by people, so sometimes the computers can do the wrong thing. When something with one of these devices goes haywire — and you get a side effect because of the therapy rather than the disease — to what degree should you be empowered?” He said he believes patients should have the ability to fix or adjust the device themselves. This launched West on his mission to reverse engineer his medical devices and develop open-source software to take control of his personal care.

Speaker Karen Sandler, JD, heartedly agreed that developing open-source software for medical devices is critical. She is the executive director of Software Freedom Conservancy, a non-profit organization that develops, promotes and defends open-source software. Her life was changed when she was diagnosed with a life-threatening heart problem and implanted with a defibrillator. “I went from someone who thought open source was cool and useful to someone who thought software freedom is essential for our society,” Sandler said...