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 […]
Seekers
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+ […]
Wow! How? Mystery vs. Moms
When her daughter, Sara, transformed from an active teen to a nearly catatonic shell of a person, Eileen Quinn knew she had to take action. Unfortunately, since Sara lives with Down syndrome her symptoms were likely to be dismissed as sad but inevitable. But Quinn had a hunch that her daughter’s rapid decline was not […]
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 […]
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 […]
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