e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Nice summary of definitions of “Health 2.0” etc
Tom Van De Belt @Tom_Zorg20, Lucien Engelen @Zorg20 and others have published a nice "line in the sand" article in JIMR (the Journal of Internet Medical Research), surveying the scientific and "gray" (Web) literature to collect definitions of Health 2.0 and Medicine...
e-Patients and doctors both, wise up. If you haven’t already.
I've only been studying healthcare for two years - far less than most people on this blog - and I hesitate to be overly assertive. But I have, finally, reached the point where I feel confident in citing cases where people are simply being unscientific: ignoring...
Why a Patient 2.0 Panel at the Health 2.0 DC conference?
This is the first of two posts about the inspiring Patients 2.0 panel I helped organized at Health 2.0 DC. This one will explain the rationale for organizing such a panel. The second will provide a link to all the presentations and to the panelist biographies. A while...
Health 2.0 DC: Passion and Execution at Scale
I think conferences are deeply affected by the spirit of their host city. San Francisco has its hackers and dreamers, Boston has its entrepreneurs and ivy, Paris has its pomp and worldliness. At Health 2.0 DC yesterday, my city showed that it has passion and...
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...
