I have never done much marketing for myself as a keynote speaker, but I am on a mission to change the world. It’s not time to be shy. I want everyone to understand the power and potential of patients, survivors, and caregivers connecting with each other to solve problems. My upcoming book, Rebel Health, is […]
Rebel Health
Longtime readers know I’ve spent the last two years writing a book about peer-to-peer health care and the incredible work being done by patients, survivors, and caregivers. (Even longer-term colleagues and friends know I’ve had this project on simmer since I left Pew Research, but I got happily sidetracked a couple of times.) I am […]
A survey about clinical trial support groups
I love talking about peer-to-peer health care, noodling over survey research questions, and meeting new people. Thanks to an introduction from Craig Lipset, I recently got to do all three. Denell Lewis is a student in the final year of her Masters of Regulatory Affairs/ Masters in Law program at the University of Pennsylvania. She […]
Caregiver starter pack
We usually don’t get to choose when to become caregivers. A crisis hits and we are dropped into a maze populated by scary monsters, like family conflict or financial ruin, and no guides. This happened to a friend of mine recently and, when her loved one’s situation stabilized, I sent her 3 things: 1. A […]
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 […]
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, […]
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