e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Rare Disease Day 2009
Today is Rare Disease Day 2009. Join us in recognizing the reality of rare disorders and celebrating the beauty in the eyes of children living with rare disease and those who have lost their lives.
MedPage: Negative Data on Seroquel Suppressed by Drug’s Maker
Update January 2011: Be sure to read the comments, which have links to many valuable resources. This item today, from MedPage, underscores the importance of having our eyes open about the human frailties in the research process that our lives can depend on. ORLANDO,...
Live Blogging the Boston Summit on Transforming Healthcare
Tonight in Boston a series of speakers are presenting views on the coming transformation of healthcare. (See the web at http://hilforum.com/transforminghealthcare/) Here’s the speaker list— Opening remarks - Steven Wardell, President, H.I.L. Forum and Summit...
Participatory medicine might have reduced this tragedy
Healthcare is complex. Worse, our healthcare delivery systems are immensely complex. Sometimes things go wrong. The long and difficult story below was submitted to me by a stalwart former member of my kidney cancer group on ACOR.org. I'm reproducing it here with her...
Why Technology is No Longer Optional in Public Health
Andre Blackman has posted an important essay about mobile tech's potential in health care -- and the imperative to not miss this cluetrain.
Medpedia: Who gets to say what info is reliable?
Unless you've been offline since Wednesday, you know that Medpedia has gone into public beta. I have a concern about the reliability of their model, based on my personal experience and the self-education I've been doing for the past year. I want to lay out the...
Disruption and the healthcare bubble
At the 25th annual TEPR+ conference in Palm Springs on Feb. 2, Alan Greene (DrGreene.com) gave the opening address. It was inspiring – I wish we had a video of it. Too bad so many attendees opted to skip the keynotes and fly into town late! Like, did you guys think...
A thousand points of pain
Cross-posted from my own blog, and then some E-patients, listen up. We have work to do, work we can do. For the past year I've been learning what I can about the American healthcare system. I started this not as an "injured" patient but as someone who benefitted...
Welcome VisibleBody.com
At today's meeting of the Advisory Board of the Massachusetts Tech Leaders Healthcare Cluster I learned about VisibleBody.com. Astounding visualization tool – like the old plastic Visible Man/Woman models of long ago. Pan, tilt, rotate, zoom. I can see this as a...
Ted Eytan’s Twitterview
"Ask your patients what they use, what they want to use, and how you can be there for them." -- Ted Eytan's advice to IT-reluctant health professionals in a Twitterview with Diario Médico.
Twitter, Facebook, and e-patients
Here is a key line from the Pew Internet Project's report on Twitter and status updating: Twitter users engage with news and own technology at the same rates as other internet users, but the ways in which they use the technology—to communicate, gather and share...
Raise Awareness of the Reality of Rare Disorders
Wendy White, Founder and President of Siren Interactive, contributes this essay: One in ten Americans is living with a rare disorder, but they are often overlooked in the media, in research circles, and in their local communities. The 2nd Annual Rare Disease Day on...
