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 […]
Public Q&A: Human-centered design
A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]
Public Q&A: Impact review
I conduct an impact review at the end of each year, looking back at how I spent my time. In 2018, I published a shareholder letter listing the questions I ask: I’d like to hear from other people who take stock around this time each year. What questions do you ask yourself? What measures do […]
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 […]
Engage with Grace
Can you and your loved ones answer these questions? 1. On a scale of 1 to 5, where do you fall on this continuum: 1 = Let me die without medical intervention; 5 = Don’t give up on me no matter what, try any proven and unproven intervention possible. 2. If there were a choice, […]
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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