e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Great news from “Mama Lion” Engelman and daughter
Three weeks ago you met mother and daughter Diane and Hilary Engelman, and learned of their odyssey through the land of smoke and mirrors as Diane fought to get Hilary the correct surgery. Hilary had been told to hurry up and have babies early because she supposedly...
Community Health Data Initiative: vast amounts of health data, freed for innovators to mash up!
A big deal happened in Washington Wednesday - something I barely knew was happening: The Community Health Data Initiative (CHDI) was announced at the Institute of Medicine. It's exciting to me, because at long last we're getting the chance to let innovators get at...
Making Health Data Sing (Even If It’s A Familiar Song)
Todd Park is determined to make health data hot. He is leading the U.S. Department of Health & Human Service's effort to make more of their data sets publicly available, from nursing home quality ratings to the food environmental atlas (view the full list of...
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...
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. Apps for America Contest Winners - Clay Johnson of...
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...
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...
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. What does it mean when millions of people flock to share/overshare information, even as Facebook's default privacy settings have slowly become openness settings (but the...
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.
“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...
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,...
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...
