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 […]
Networkers
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? For Love & Life
This essay is part of my LinkedIn newsletter series: Wow! How? Health. Brian Wallach and Sandra Abrevaya brought their second daughter home on the same day that he received a devastating diagnosis: amyotrophic lateral sclerosis (ALS). Brian was told he had six months to live. Seven years later, Brian is still alive. He and Sandra […]
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 […]
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