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 networks
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 […]
Doing the work
I am thrilled to share that I am writing a book for MIT Press about the alchemy, grit, and soul of the health innovation pipeline that is powered by people connecting with each other to solve problems. Here’s the back story, which illustrates one of my core principles: Do the work that needs to get […]
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