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 […]
Solvers
Wow! How? Patient-led Biodesign
This post is part of my LinkedIn series: Wow! How? Health. Jules Sherman designs pediatric medical products, like a delayed cord-clamping cart and a special robe to help make neonatal skin-to-skin care safer. In 2016, she was called into a hospital room to observe a new mom using a device that Sherman had created to collect […]
Wow! How? Obesity Treatment
This post is part of my LinkedIn series: Wow! How? Health. Four in ten U.S. adults have obesity, according to the National Center for Health Statistics. That includes 9% of U.S. adults with severe obesity, which is defined as having a body mass index over 40. Shame and stigma compound their health problems. “You wear […]
Wow! How? Learning Health Networks
In 2007, pediatric gastroenterologists began tracking and sharing best practices as they cared for kids with Crohn’s disease and ulcerative colitis. Their “all teach, all learn” philosophy invited patients and families to participate as key members of the care innovation teams. The results have been astonishing: 82% of patients in the ImproveCareNow network of 100+ […]
Discovery Diaries with Damon Davis
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 […]
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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