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 […]
Wow! How? Public Access to Research
This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. The U.S. National Library of Medicine’s PubMed indexes over 36 million biomedical research abstracts – a searchable trove of evidence that has been available to the public since 1996. It is both a national […]
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