by e-Patient Dave | May 18, 2010
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...
by e-Patient Dave | May 17, 2010
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...
by e-Patient Dave | May 10, 2010
The new definition of participatory medicine at the Society’s website notes that patients “shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as full partners.” As with any...
by e-Patient Dave | Mar 19, 2010
If you haven’t found him yet, Bertalan Meskó is one of the best new-generation doctors making the most of social media. While he was still a med student his ScienceRoll blog won Blogger’s Choice in 2007, and last month it won Medgadget’s prestigious...
by e-Patient Dave | Feb 1, 2010
Re Time’s article “Group Therapy” in the February 8, 2010 issue, arriving on newsstands now: Time’s freelance reporter Bonnie Rochman contacted our Susannah Fox to discuss her remarks at the Institute of Medicine last October. In hours of...
by e-Patient Dave | Nov 16, 2009
In last weekend’s post about “patients want all their data” I said I wished I’d known about the article (published mid-May) during last summer’s health data debates in Washington. Incredible Dutch e-patient Lodewijk Bos tweaked me, saying...
by e-Patient Dave | Sep 1, 2009
I can barely contain my happiness (oh heck, I’ll let it spill) at this: participatory patients and physicians creating educational content, using free internet software tools, and posting it for people to read (free) around the world. I’m a member of the...
by Joe Graedon | Jun 25, 2009
Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don’t detect all the adverse drug effects that may be important. Far too often, serious side effects...
by Alan Greene | May 27, 2009
Not Your Father’s Doctor-Patient Relationship – A Positively Revolutionary Approach In pediatrics, research has shown that not all parenting styles produce equal outcomes. Researchers often categorize parenting styles into four groups according to parents’ level of...
by Sarah Greene | May 11, 2009
My son graduated from college last year and is now in Nepal, visiting schools and writing about rural education under the Maoist regime. He was excited to tell me, when I visited him recently in India, about how a classic book on education, Pedagogy of the Oppressed...
by Gilles Frydman | May 6, 2009
Clinicians, the Government, and many other groups are working hard to improve health care quality, but it’s a team effort. You can improve your care and the care of your loved ones by taking an active role in your health care. Ask questions. Understand your...
by Gilles Frydman | Apr 3, 2009
Amy Marcus, in today’s WSJ, wrote a powerful article about a mom moving medical mountains to help her twin daughters survive a rare and deadly disease. Entitled “A Mom Brokers Treatment for Her Twins’ Fatal Illness. Bucking Scientific Convention,...
by e-Patient Dave | Mar 19, 2009
Update 3/21: For easier reference, I’m editing this to incorporate some goodies from comments below. Here’s a little game that just might turn into something transformational. Since I started learning about this world of participatory medicine, I’ve...
by e-Patient Dave | Feb 14, 2009
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...
by e-Patient Dave | Jul 28, 2008
Medpedia has gotten a lot of publicity in the past week. Considering that Wikipedia has disavowed* usefulness for patients, Medpedia sounds like a potentially great idea. * See Jon’s correction in Comments. –EPD But when I saw their home page it literally...
by Cheryl Greene | Jul 25, 2008
Most of us know Randy Pausch from his video lecture “Achieving Your Childhood Dreams”, taped at Carnegie Mellon as part of their “Last Lecture” series. His hope and optimism in light of a crushing diagnosis brought millions up short as they...
by e-Patient Dave | Jun 15, 2008
Aside from debunking a crummy column, this is a call to action for journalists. Today Parade featured a column that appears to be pure flackery. If the editors had done a reality check with a patient community they would have been much better informed, with little...
by Cheryl Greene | Jan 6, 2008
For years Doc Tom urged us to facilitate patients’ publicly rating doctors as a way to accelerate e-pateints movement. Alan (DrGreene) was excited about this, even though he was a physician, but I was afraid it would open Pandora’s box. In the winter of...
by Susannah Fox | Dec 22, 2007
Since it is the season for “Auld Lang Syne” and reconnecting with old acquaintances is an internet pastime, I wanted to link to a wonderful article by Wayne Cooke, a stage IV colon cancer survivor and true e-patient. I haven’t seen him in many years, but because of...
by John M. Grohol, Psy.D. | Dec 6, 2007
Wow is all I can say. When I came across this discussion on MetaTalk, the discussion site for an old community blogging site called MetaFilter, I was taken aback. The discussion is about how “wrong” the people who responded to a request for opinions and...
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