While writing my upcoming 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 […]
Dana Lewis
Too legit to quit
Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]
Celebrating #BCSM as a peer health innovation
Cancer patients were among my first peer health innovation teachers and remain, years later, among my favorite communities to follow. I keep an eye out for hashtags like #gyncsm (gynecological cancer social media), #bcsm (breast cancer social media), and #lcsm (lung cancer social media) on Twitter. I listen to podcasts like The Cancer Mavericks (and […]
Peer health playbooks
I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments. I AM ALS put together a step-by-step playbook of how […]
Why entrepreneurs should listen to patients & caregivers
I am thrilled to share this excerpt from the Harvard Business Review article I wrote, “How Chronic-Disease Patients Are Innovating Together Online”: The internet gives us virtually unlimited access to each other. That deceptively simple insight is an untapped opportunity in health care. When companies are searching for their next idea, they should look to […]
Chasing cures
Years ago, I met a mom of a child with a rare disease who matter-of-factly shared her story, which included as many twists and close calls as any blockbuster summer movie. I marveled at her heroism and she said no, she rejects that description. “I’m not a hero,” she insisted. “I’m a typical mom. You […]
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