A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]
Patient-Led Research Collaborative
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 […]
The Next Big Thing in Health
This week I was a guest on the Next Big Thing in Health podcast (listen here or wherever you get your podcasts). I thought I’d share links to some of the people and resources I mention: ARCHANGELS WORK helps people translate the skills and experiences they acquired as caregivers into talking points for a job […]
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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