I shadowed a mom and her 5-year-old with CF from afar for 24 hours. It taught me more than I could have imagined about living with a life-shortening disease — and about myself. This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other.
cystic fibrosis
What health care can learn from Mike Mulligan and his steam shovel
Google is upgrading health search…again. In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.
Weekend update
Last Saturday I posted a round-up of what caught my eye during the week and my friend Andre Blackman (@mindofandre) created this awesome graphic: Thus encouraged, here’s another round of what I favorited on Twitter this week: Nancy Stein (@SeniorityMatter) shared an opinion piece by Rob Lowe about long-term care planning. He’s promoting his partnership […]
What I’m reading, listening to, admiring…
I hunkered down at the library this week, working on a couple of long-term projects. I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week: Radiolab: Worth — what would you pay for another month of life? How about a year? […]
Save us, Facebook
The Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way. […]
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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