I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. Emily Kramer-Golinkoff, in response to “A field guide to The Diagnosis Difference” (2013): My advice to a person or parent of a child newly diagnosed with Cystic Fibrosis would be: “I can only imagine […]
cystic fibrosis
How did you find your people?
The internet gives us access not only to information, but also to each other. That deceptively simple insight, gained from years of research, contains so much of the hope I have for the future of health and health care. When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. […]
What I’ve been working on
It’s been a busy few weeks and I’d love to share a few items in one post: I served as the emcee at the Robert Wood Johnson Foundation‘s Data for Health report release event. I attempted to capture the spirit of the event in this Storify. Here’s a post I wrote about the Data for Health initiative: Imagining […]
Cystic Fibrosis For One Day
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.
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 […]
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