by Susannah Fox | Oct 30, 2008
The Center for Connected Health’s 2008 Symposium was held in Boston on October 27-28, 2008. I gave a talk entitled, “Participatory Medicine: How User-Generated Media are Changing American Attitudes and Actions, Online and Off.” As always, the...
by e-Patient Dave | Oct 27, 2008
This post is prompted by a horrid subject: how do we as a society deal with one of the worst possible events – a death in our healthcare system? The immediate topic is a 37 year old woman who died last week at Beth Israel Deaconess Medical Center (BIDMC). An article...
by Alan Greene | Oct 26, 2008
Thomas Jefferson had a radical notion: When the people are well-informed, they can be trusted to govern themselves. This powerful idea worked to end our rule by the King, but at the time it didn’t apply to slaves; it didn’t apply to women. It STILL...
by e-Patient Dave | Oct 24, 2008
What do we think of THIS?? An op-ed piece in the NY Times:Billy Beane, GM of the Oakland Athletics, suggests using baseball-style number-crunching to improve healthcare, with Newt Gingrich and John Kerry co-authoring the piece. Some snips: “Remarkably, a doctor...
by e-Patient Dave | Oct 16, 2008
As an empowered patient I’m willing to go to the ends of the earth to help the medical community get beyond the famed “culture of blame,” so everyone involved can learn from errors. Boston’s Beth Israel Deaconess Medical Center had a wrong site...
by Gilles Frydman | Oct 15, 2008
“Crowdsourcing: the act of taking a job traditionally performed by a designated agent and outsourcing it to an undefined, generally large group of people in the form of an open call.” Jeff Howe Or in other words Participatory Outsourcing. There is clearly...
by e-Patient Dave | Oct 11, 2008
Ted Eytan has a post by this name. It’s a question asked of him by Ann Barber, MD. I couldn’t be happier! His post and the comments have gotten lively. I posted about Chapter 2 of e-Patients: how they can help us heal health care, which includes the seven...
by Susannah Fox | Sep 26, 2008
Josh Seidman has a new entrant in the health care name game: The Im-Patient Consumer. As he explains, “Americans for the most part are too [expletive of choice] patient with the absurd care that they get for more than $2 trillion a year.”...
by Gilles Frydman | Sep 24, 2008
The growth of the e-Patients movement may be experiencing surprising strength from a completely unexpected source, with many people growing the ranks of the movement because of the greatest motivator of all: saving money. Clay Shirky’s cognitive surplus...
by Gilles Frydman | Sep 22, 2008
Why have rare diseases been so disproportionally represented in the world of internet-based online medical communities since the early 90s? Is there a unique reason to explain why so many of the rare disease patients understood long before anyone else the importance...
by e-Patient Dave | Sep 18, 2008
In today’s Windows Secrets, Stuart Johnston writes about the pros and cons of having our health data out on the Internet, as proposed by Google Health and Microsoft HealthVault. Quotes: “Selling prescription records is a multibillion-dollar-a-year...
by e-Patient Dave | Sep 16, 2008
Please read these quick posts being submitted in real time from an event today. Contains much important (to me) info on what’s going on to improve healthcare. Every e-patient advocate should be aware of this, I think. For instance I never heard of the 1999...
by Susannah Fox | Sep 15, 2008
The National Institutes of Health recently gathered a group of consumers and people who study them. We met off-site at a hotel in Bethesda, which I thought was an apt metaphor for the day’s question: How can NIH better communicate with the public? First, I said,...
by Susannah Fox | Sep 4, 2008
The Journal of the National Cancer Institute published health risk data in a way that only a researcher would love (Reason.com’s Hit & Run blog links to the subscription-only charts here in case you want to marvel at the ugliness). Luckily The New York...
by e-Patient Dave | Aug 7, 2008
I’m delighted to present a guest post from cancer patient Monique Doyle Spencer, whose husband found the henna relief for hand-foot syndrome we mentioned yesterday. She is a stitch. To me she’s about as empowered as they get, but she says she’s...
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 e-Patient Dave | Jul 15, 2008
Click images to view full size originals. Last weekend I stumbled across the “attic” of Tom Ferguson MD, who was the “George Washington of patient empowerment,” as CNN put it this month, citing his work since 1975 to create a world of freedom...
by Dan Hoch | Jul 10, 2008
In a piece in the New York Times 7/9/08 (Abuses are Found in Online Sales of Medication) a report (also out Weds) from Columbia University is described. According to the authors, 85% of online sites that sell medications directly to the public do not require a...
by Alan Greene | Jul 8, 2008
Our dear friend, our brother, our hero, the inimitable Doc Tom, died on Good Friday 2006. Even though his untimely death came as a shock, Tom Ferguson had already far outlived the projections at the time of his Myeloma diagnosis over 15 years before. July 8 is Tom’s...
by Jon Lebkowsky | Jul 4, 2008
Following up on Gilles Frydman’s comments about Observations of Daily Living (ODL), we found another ODL post by e-Patients Group ally Kevin Kelly at The Quantified Self:Detailed quantifiable self-observation has a new handle. It is called ODL or Observations of...
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