When people’s questions go unanswered, they don’t stop asking them. They turn to Dr. Google and other sources. They try to solve their own mysteries, using whatever they can find. This is an opportunity that some people misread as dangerous or wrong. How might we help more people contribute to discovery of new treatments or […]
participatory research
The Rise of the New Bio-citizen
Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]
Access to results that matter
The Patient-Centered Outcomes Research Institute (PCORI) will kick off their annual meeting on Tuesday, October 31. I will moderate the first panel, “Access to Results That Matter,” and, as I like to do, I’m starting the conversation early online. Here’s the session description: Traditional health research often does not provide the answers to patients’ questions […]
“His doctors were stumped. Then he took over.”
How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]
Quantified Self Public Health
Quantified Self Public Health is back! 150+ health geeks of many stripes will gather on Thursday, May 14, in San Diego to discuss how access to personal data could benefit individuals and society. It is an invite-only meeting (sorry!) but filled with voracious documentarians like Joyce Lee (read her Storify from last year) and, well, me (read […]
How did we get here? And where are we going?
Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish): It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future. I opened with an example that was inspired by a visit […]
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