e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Fred Trotter: “e-Patients: The Hackers of the Healthcare World”
SPM member Fred Trotter is a member of the open source / innovator community that knows "hacker" as a noble word - people who disregard how something was intended to be used (by its designers) and rearrange the parts to suit their needs. Today on the O'Reilly Radar...
Epic tale of Gimme My Son’s Damned Data! – by a doc *at his own hospital*
Followers of our "gimme my data" series will get a rough-edged refresher about current reality by the well-written and raw story of @WilliamDale_MD's Sunday post Medical Health Record: A Personal Journey Down the Rabbit Hole. A great narrative by a physician who...
Facebook as a source of healthcare value?? Item 2
As we work to re-engineer both the culture and the structure of healthcare, one question that constantly faces e-patients with uncommon or difficult conditions is: Where do I turn, to find genuine value? The traditional answer is "ask your doctor," and clearly that...
Monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine
Follow us on Twitter (@S4PM), Facebook, and LinkedIn! Here's how to become a member, individual or corporate. Our publications: Our blog is e-patients.net. Subscribe via RSS or email, tweets etc. Our open-access journal is the Journal of Participatory...
ACOR kidney cancer community wins 25th anniversary “Maily” Listserv award
It's fitting that our last post of the year should be about a patient community ... winning an award! ACOR's "KIDNEY-ONC" kidney cancer patient community was recently honored with the "Maily" Listserv Choice award in this, the 25th anniversary year of Listserv®...
A physician who really understands patient-centered care
The Journal of Participatory Medicine has just published "The Patient Will See You Now," a thought-provoking and rather moving narrative by John Krueger, MD. In telling his own story of becoming and maturing as a physician, the author persuasively argues that the key...
Fred Trotter: Data, damn data, and statistics
Why does this blog use the word "damn" so often? A search produces a whopping 38 hits, such as: Fools! Damn fools! And Medical Science (Right, Santa??) Atlantic: Lies, Damned Lies, and Medical Science “Gimme my damn data!” The stage is being set to enable...
Most popular health *topics* of 2011?
To understand a headline - especially a year-end "Top N" list - you need to look under the hood and find their criteria. Yesterday the New York Times Well blog posted The Most Popular Health Topics of 2011. I looked, eagerly, to find the rise of patients. Nothing of...
Rookie e-patient @Xeni helps the docs view her data
Update 6:33pm ET: the Storify feed wasn't working. Should be fixed now. What a rocket ride it's been for Xeni. Tuesday morning we reported on the BoingBoing co-editor's unexpected breast cancer diagnosis 12/9, and her odyssey reading her scan data. (CDs didn't come...
Book review takes a look at neurofeedback
The Journal of Participatory Medicine has published a review of A Symphony in the Brain, a book that offers a history and overview of neurofeedback, a type of biofeedback that aims to help patients control their brain activity.
Patient and family engagement in hospice decisions – if they’ll let you
One of the highlights of 2011 for me was the introduction in May (see our post) of the Engagement Behavior Framework by SPM member (and JoPM founding co-editor) Jesse Gruman. She and her team methodically identified 43 behaviors to be done by an engaged patient or...
The #firstMRI project: helping patients through that horrible first MRI
As you can see in the later comments on Tuesday's post, @Xeni's first MRI did not go well. She was given no hint of what the experience would be like - the horrible banging and clanging in the claustrophobic space - and the tech operating the thing "scolded" her...