Vicki McCarrell had always dreamed of becoming a mother. When she gave birth at age thirty-eight to her son Sean, life seemed complete. Yes, he had the full facial paralysis typical of Moebius syndrome, but otherwise, he looked perfect to her. Indeed, at the hospital near her home in Van Nuys, California, she was given […]
peer-to-peer healthcare
Rare Disease in the U.S. 2025
Rare disease communities welcomed me as a researcher, inspired me to highlight their ingenuity in my book, Rebel Health, and now I am honored to share results from the first probability-based national survey to measure the rare disease population. I partnered with my former Pew Research colleague Kristen Purcell, now at SSRS, to write the […]
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 […]
Wow! How? Peer Warmline
This essay is part of my LinkedIn newsletter series: Wow! How? Health. About two million people in North Carolina experience a mental health or substance use disorder crisis each year. Historically, about half did not receive treatment because of cost, leading to repercussions for families, communities, and individuals. A new Peer Warmline, staffed by counselors […]
Patient-led innovation
Update: Here’s a link to the list I created based on the comments gathered here and on Twitter and LinkedIn. I am curating a list of organizations that are putting patient-led innovation to work. What follows is an incomplete list — please help me by sharing YOUR favorite peer-to-peer communities in the comments below. Extra […]
Champions fast-track innovations
Champions help take a scrappy patient-led idea to scale. They give Seekers, Networkers, and Solvers access to resources held by mainstream institutions such as funding, media attention, regulatory guidance, or access to labs and manufacturing facilities. Champions fast-track innovations. This is the fourth post in a series that I’m writing to introduce the archetypes of […]
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