Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]
Long Covid
The Black Panther Party’s Health Innovations
Here is the 40th in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. In 1971, the Black Panther Party diagnosed the federal government’s failure to study sickle cell anemia, a genetic disease believed at the time to be found predominately in people […]
Wow! How? In-your-face Expertise
This post is part of my LinkedIn series: Wow! How? Health. I welcome comments on either platform. Thirty-three years ago today, on September 5, 1991, activists unfurled a giant, inflatable condom over a U.S. Senator’s house. Don’t believe me? Watch a 30-second news clip or a 5-minute documentary about the action. It was a splashy way […]
Wow! How? Patient Memoirs
In his book, The Long Haul, Ryan Prior writes about his advocacy on behalf of people with ME/CFS: Though I had negotiated a fragile truce with the disease, my deeper fear was that it would eventually fully disable me, just as it had done for so many of my friends…At the edge of my every thought […]
Public Q&A: My 5 favorite books on how to defend yourself against the U.S. health care system
Shepherd.com invites authors to write heartfelt reviews of other people’s books on a topic related to their own work. The site is a rabbit hole that you will LOVE exploring, so go ahead and click on, for example, “The best books about America’s toughest time: life in the dirty thirties” or “The best children’s books […]
Covid and the Future of Health
You are cordially invited to a book talk & reception on Wednesday, May 29, at 7pm at the Tabard Inn in Washington, DC. Ryan Prior, author of The Long Haul, and I will discuss how innovative patients are changing medicine for the better and where we see this grassroots movement heading next. If you haven’t […]
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