I’ve been following Bertrand Might’s story for a few years through his parents’ blog about his “movement disorder” (which turns out to be related to his incredibly rare condition, NGLY1 deficiency). Last week, Matthew Might co-authored a commentary with Matt Wilsey in the journal of the American College of Medical Genetics and Genomics: “The shifting model […]
peer-to-peer healthcare
Oversharing is in the eye of the beholder
I got to quote Thomas Jefferson in an essay I wrote for the Pew Research Center’s FactTank blog today: “Who then can so softly bind up the wound of another as he who has felt the same wound himself?” It’s about Lisa Bonchek Adams and the spotlight that has been thrown on the use of […]
Mobile, social, health, care
A clinical trial in Kenya confirmed that human kindness is the secret ingredient to health and mobile phones are an ideal delivery system. Well, that’s my interpretation. Here’s the gist: Taking your meds is essential to maintaining your health when you live with a chronic condition. People know this, but they need help doing it. […]
What if health care dreams started coming true?
Some new “What if health care…?” dreams are circulating and since they are specifically related to my research, I have to call them out. First, check out this article by Eugene Borukhovich about the power of DIY health care tools and self-tracking — and how we need to move toward DIT (do it together): A new […]
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 […]
On the internet, the expression of your spirit has nothing to do with the expression on your face.
– the line I added to my speech on the train up to Philadelphia last Saturday. I wanted to convey to the people attending the 2012 Moebius Syndrome Conference that I admire them and see them as pioneers of peer-to-peer health care. My full post is on e-patients.net: Health Care Hackers
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