Health System Change: Collaborative Researchers
Ha Tu and Genna Cohen of the Center for Studying Health System Change released their latest report on how Americans gather health information (HTML report; news release).
I met with them in June and learned a bit more about how they approached this massive data set (N=18,000+).
Doctors’ Digital Footprints
Is it “disordered” behavior to Google your doctor? An article in JAMA suggests that doctors be on their guard.
Latinos’ sources of health information
The Pew Hispanic Center and the Robert Wood Johnson Foundation released a report today that is required reading for anyone interested in a more nuanced picture of the e-patient population: “Hispanics and Health Care in the United States: Access, Information and Knowledge.”
Monique tells why she doesn’t see herself as “e”
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 always felt a bit cowed by all this e stuff. We persuaded her to gift us with an essay. –e-Patient Dave
It used to be true: I didn’t understand this “e” thing — e-patientcy, e-patienthood, e-patience, e-patient-nation. I was more of a d-patient – disengaged, disinterested, detached. The only “e” I had was “electronic,” but why would I use that “e” for medicine when there are so many jokes to find and I have a discount coupon for www.more.stuff.i.want.and.if.i.buy.even.more.ill.get.freeshipping.com?
e-Patient finds henna relief for Hand-Foot Syndrome
Update 8/9/08: Monique posted the detailed instructions she uses at the blog she started for Xeloda side effects.
Monique Doyle Spencer, author of the fabulous book The Courage Muscle: A Chicken’s Guide to Living with Breast Cancer, is on Xeloda, and is experiencing a painful side effect called Hand-Foot Syndrome (HFS), which happens with some other cancer treatments too.
Doing classic e-patient-style research, her husband found an amazingly simple and effective relief - a paste of henna, lemon juice, and hot water. She was skeptical (”I don’t even own a single Enya CD”), but it worked.
She notified Roche, maker of Xeloda, and was rather unhappy about their form-letter lack of interest in telling anyone else.
Her op-ed about it in the Boston Globe is here, and the discussion on Paul Levy’s “Running A Hospital” blog is here.
Be sure to read the extensive comments, which show the vigorous patient-centered dialog that often happens on Levy’s blog, even though it roams to other subjects, as often happens on a blog where people actually get to say what they think.
New e-patient population estimate
The Pew Internet Project released the latest estimate for the e-patient population: 75% of internet users. Details on this and an upcoming survey follow…
white paper
e-Patients:
How They Can Help Us Heal Healthcare
