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 […]
patient networks
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
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 credit if you can share how they have had an impact on the public conversation, treatment of a condition, device […]
Should peer health community moderators get paid?
Evidence is piling up in favor of peer health communities. The question is: How do we sustain them for the long-term? Here are 3 studies (of many) about the benefits of peer-to-peer health advice: A survey of the #bcsm community found that participation lowered people’s anxiety and increased their overall knowledge of breast cancer. A survey of […]
Celebrating #BCSM as a peer health innovation
Cancer patients were among my first peer health innovation teachers and remain, years later, among my favorite communities to follow. I keep an eye out for hashtags like #gyncsm (gynecological cancer social media), #bcsm (breast cancer social media), and #lcsm (lung cancer social media) on Twitter. I listen to podcasts like The Cancer Mavericks (and […]
Consumer-strength tools,
industrial-strength innovation
On August 31, I’ll be part of the 2021 Federal Wearables Summit. This post is my attempt to “flip” the event by sharing what I intend to say. Please let me know what you think in the comments below. In 1986, Eric von Hippel of MIT identified “lead users” as people who identify and solve […]
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