Damon Davis has a new podcast, Discovery Diaries, and I was honored be among his first guests. We got into a wide range of topics: the origins of my interest in patient-led innovation; artificial intelligence and how patients, survivors, and caregivers should be included in the design of AI tools; our time working together at […]
Dana Lewis
The Other 80
Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts. You can hear in my voice […]
Books I read while writing Rebel Health
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 […]
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 […]
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