Susannah Fox spent 14 years at Pew Research mapping how Americans actually behave online, then became the third Chief Technology Officer of the U.S. Department of Health and Human Services. Somewhere between anthropology fieldwork and the federal government, she found the through line that has driven her entire career: wherever there is an imbalance of access to information, there is unnecessary suffering, and closing that gap is where health begins.
In this episode of Inspiring Women, host Laurie McGraw talks with Susannah, author of Rebel Health, A Field Guide to the Patient Led Revolution in Medical Care, about what happens when patients stop waiting for permission. She tells the story of John Costik, a father who jailbroke his four year old son's continuous glucose monitor so he could check his son's blood sugar from an Apple Watch instead of stumbling down the hallway every few hours, then shared exactly how he did it online. What started as one dad's hack became a global, patient built movement, and eventually an open source artificial pancreas system the FDA never saw coming.
The conversation moves into caregiving, a role nearly 40 percent of Americans quietly carry without ever calling it work, and then into the subject most people avoid entirely: dying. Susannah is a certified death doula, and she and Laurie share deeply personal stories about caring for their own parents at the end of life, what it means to die with dignity, and why so few families ever get the chance to plan for it. Susannah explains why she believes the missing piece isn't more medicine, but better data and better stories about how people actually want to leave this world.
Guest: Susannah Fox, health and technology strategist, former U.S. HHS Chief Technology Officer, and author of Rebel Health
Host: Laurie McGraw
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