“Anne” is a mother I met in my fieldwork who was happy to share her story, but not her name. Her son had become sick very suddenly, complaining of a combination of symptoms that were difficult to pinpoint. Anne took him from one specialist to another, who performed test after test, but they could find […]
patient networks
Wow! How? Health
Wow! How? Health is a LinkedIn newsletter that will feature the Wow! stories of patients, survivors, and caregivers who are doing extraordinary things, along with the How? lessons that we all can learn. Subscribe to the newsletter or to my blog (I’ll cross-post here). Today’s story is about how connecting with a peer, a “just-in-time someone-like-you,” can make all the […]
Cover reveal
I am thrilled to share the cover design for my upcoming book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, set to come out in February 2024 from MIT Press. The design is inspired by what Clara Ganz created for me — a bright, joyful color scheme with a type treatment […]
Pre-order Rebel Health
If you are likely to buy a paper copy of my upcoming book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, Barnes & Noble is offering a 25% discount if you order by September 8, 2023. Here’s a direct link. Note: you need to create a free account and use the […]
The Promise of Patient-Led Research Integration
The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC) have developed a collaborative research model for use by patients and patient organizations, funders, research institutions and other traditional biomedical research teams. The project was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI). The model is represented by a set […]
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 […]
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