My phone started blowing up with texts from friends and family members yesterday morning, alerting me to a New York Times magazine cover story by Amanda Hess, “My Son Has a Rare Syndrome. So I Turned to the Internet” (gift link). Hess writes beautifully about her experience being dropped into the medical maze and her […]
New York Times
The New York Times: “Sometimes Patients Simply Need Other Patients”
Aaron E. Carroll and Austin Frankt co-wrote an excellent article about peer-to-peer health care in The New York Times today. An excerpt: In an ideal world, when we are faced with a new health problem, a clinician is available to sit down and address all our questions and anxieties about the condition and its treatment. […]
Ribbons, ribbons, everywhere
Peggy Orenstein‘s article, “Our Feel-Good War on Breast Cancer,” is worth one of your precious NYTimes.com chits (unless, of course, you’re a subscriber, in which case you have hopefully already devoured it). But don’t just take my word for it, read this post by Katherine O’Brien of the Metastatic Breast Cancer Network — the bloggers […]
Who provides the fuel for the health data fire? Hint: Look in the mirror.
“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.” I think personal data is fueling health […]
The boy with a thorn in his joints (and the mom who turned over every rock)
When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their […]
“So many quiet heroes and heroines who live among us…”
– Zoe Brain, in a comment on the New York Times magazine story, The Hazards of Growing Up Painlessly, which garnered an extraordinary display of public ignorance and fellowship around rare conditions. My hope is that the reporter and editors read every comment and learned from the community peer review of the article.
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