Yoko Sen is a musician who, when spending time in a hospital as a patient in 2012, noticed that her cardiac monitor and another patient’s fall-risk alarm created a spooky chord known as the devil’s interval. Composers use it sparingly because it sounds so foreboding. Even in a weakened state, Sen began asking questions about […]
Solvers
Wow! How? Patient Data Rights
Until relatively recently, people living with diabetes were shut out of conversations about improving the devices that keep them alive. Device manufacturers saw clinicians as their customers, not patients, and nobody was asking them to change that stance, including the FDA. Patients and their loved ones were grateful to have insulin pumps and continuous glucose […]
Public Q&A: Rare Disease and Rebel Health
The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]
Wow! How? Patient-Led Research
A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]
Wow! How? Gleevec
When Norman Scherzer’s wife, Anita, was diagnosed with a rare form of cancer in 1994, he found that the most up-to-date information was being traded among patients who were connecting via email. When a new test, a new drug, and a new clinical trial were all developed at the same time, Scherzer helped organize the […]
Wow! How? End of life
What if I told you that a key health care metric grew in a positive direction, from 24% to 31% in 15 years? What if I then told you that a big part of the change was driven by people inspired by personal experiences, not clinical training? Most Americans tell survey researchers they don’t want […]
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