While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I […]
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? Ring Theory
The swirl of holiday parties, family gatherings, and gift shopping expeditions (online and offline) have me feeling overwhelmed. And I know I’m not alone. Thanks to the 2023 ARCHANGELS Caregivers & Holidays Survey we have data on a key group of people: Take a moment to think about who in your life is going through […]
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 […]
Engage with Grace
Can you and your loved ones answer these questions? 1. On a scale of 1 to 5, where do you fall on this continuum: 1 = Let me die without medical intervention; 5 = Don’t give up on me no matter what, try any proven and unproven intervention possible. 2. If there were a choice, […]
Wow! How? False Boundaries
This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for […]
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