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 […]
Dana Lewis
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 […]
“Human stories really are what drive us…”
The more we open access to the data, information, and tools people need to solve their own problems, the better. That’s the essential message of the research and consulting I’m engaged in these days, helping leaders to see the opportunities that spring, for example, from tapping into the zeitgeist of social platforms and new data […]
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