e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Participatory Medicine at NIH, part 2
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, make it easier to access your research. Make your […]
Safety Net Populations
I recently spoke at a workshop entitled Patient Online Access in the Safety Net. (Check out these related posts.) Click image to view full size original. The organizers, Ted Eytan and Veenu Aulakh, asked me to create a participatory presentation, which definitely pushed me out of my comfort zone since I had to be ready […]
Comarow on Quality
Avery Comarow’s blog on USNews.com is my personal find of the week. I once worked with Avery, so I know he tells it like it is, and he’s tackling an important topic. Check out his take on the CMS Hospital Compare page: Hospital Deaths Go Public.
Not Just a Pretty Picture
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 Times took notice and painted a picture that everyone can appreciate. […]
Eyeballs AND Data, Please
Jeff Howe’s blog post, “Can We Crowdsource Medical Expertise?” elicited the following comment from Daniel Reda of CureTogether.com: “Personally, just like I have batting averages, crash test ratings and historical earnings, I’d like to see the data on whoever interprets my MRI and whoever makes my diagnosis, regardless of whether it’s an amateur in a […]
What’s in *your* MIB?
[Video at http://services.brightcove.com/services/viewer/federated_f8/1418520436 is no longer available] A week ago Ted Eytan posted about a Consumer Reports Health blog post, including a video of a patient who is unable to get health insurance because of an error in...
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+). Please consider supporting the Society by joining […]
Doctors’ Digital Footprints
Is it “disordered” behavior to Google your doctor? An article in JAMA suggests that doctors be on their guard. Please consider supporting the Society by joining us today! Thank you.
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.” Please consider supporting the Society by joining us today! Thank you.
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...
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 […]
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… Please consider supporting the Society by joining us today! Thank you.