Society for Participatory Medicine
e-patients.net blog
e-patient stories, patient networks, pt/doc co-care, pts as teachers, research issues, Why PM
e-Patient Judy Feder’s time runs out
As many of you know, a hard part of being in the world of cancer fighters is that sometimes we lose one. I’m sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her e-patient community (BCMets), she learned of [...]
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Gov 2.0 Expo: Health Geek Guide
The cross-disciplinary smorgasbord that is Gov 2.0 Expo will be held this week in DC. The agenda is packed with nerdy temptations (danah boyd! Anil Dash! Tim Berners-Lee!) but here are my can’t-miss sessions.
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It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine
It may be time to mention again the definition of Participatory Medicine: Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. The following guest post is a powerful demonstration that these are not [...]
Read Moree-patient stories, others' e-patient stories, policy issues, pts as teachers, reforming hc, trends & principles, Why PM
Donna Cryer’s “I am an e-patient” story: e-patient advocate to the FDA
Meet Donna Cryer – another person who was an e-patient before she ever heard the word. (Weren’t we all?) As with Diane Engelman’s “mama lion” story this week, we connected with Donna through the internet. I heard her speak last month at the National Library of Medicine’s e-Patient Conference. (Yes, they had an e-patient conference!) [...]
Read Morepatient networks, policy issues
A New Conversation About Health Privacy: Who’s In?
Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care.
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Big, deep Time article on “oversharing” & privacy
@ej_butler (Brisbane’s Ed Butler) pointed out an extended online version of ”In Praise of Oversharing” from Time, May 31. Thoughty and nuanced, with a healthcare spin.
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“If fire were invented today”: empower the young
In my May 5 keynote at the ICSI / IHI Colloquium, one of my slides said “Empower the young.” It cited David Blumenthal MD, National Coordinator for health IT at the Dept of Health & Human Services. I’d recently heard him say, “At Massachusetts General I had to get into IT, to keep up with [...]
Read Moree-patient stories, hc's problem list, positive patterns, reforming hc, Why PM
Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey
Through the magic of Google Alerts, Diane Engelman recently learned of this blog. She’s one heck of an e-patient, though until now she’d never heard the word. That proves patient empowerment is a real trend, driven by a powerful force: the desire to help oneself – or, often, one’s child – in any way possible, [...]
Read Morefound on the net, patient networks, pts as teachers, research issues, Why PM
Patients Like Me beats Lancet Neurology by a mile
Patient networks for the win! MIT Technology Review: “Earlier this month, the journal Lancet Neurology published a study showing that the generic drug lithium did nothing to slow the course of ALS … Eighteen months earlier, PatientsLikeMe, a for-profit patient networking site and data aggregator, had come to a similar conclusion, much more quickly and [...]
Read Morekey people, pts as teachers, Why PM
“What I’ve Learned from e-Patients”: Doc Tom and Dan Hoch, 2005
Thanks to the extraordinary Dutch e-patient / expert patient Lodewijk Bos (Twitter), president of ICMCC, I discovered this classic that I didn’t know existed. Our founder “Doc Tom” Ferguson died 8 months later so I never knew him, but this piece makes clear that the work we do here had been underway for years. This [...]
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