e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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...
Two great posts on how patients can be responsible for their care
In the Society for Participatory Medicine we talk about patients shifting "from being mere passengers to responsible drivers of their health." Two posts Tuesday from SPM members provide some great specifics. First, orthopedist @HJLuks published Your Role in Avoiding...
Gimme My Damn Data: cancer patient Xeni finds a “ghost penis” in her bone scan
This post contains street language about body parts, harvested from Twitter last night with Xeni's permission. This is a story of a non-medical person getting it in gear when she finds herself in need, and what happens when she does. A famous blogger/journalist is...
Important papers released on patients and their medical records
Important update: I just learned that the full text of these articles is open access! Thanks to the Annals for giving patients access to the text - since it is, after all, about patients see the information. OpenNotes article: "Inviting Patients to Read Their Doctors'...
Two new JoPM articles tell one great participatory medicine success story
The Journal of Participatory Medicine has published a pair of complementary articles, one by a patient advocate and one by a physician, both concerning the story of a woman who worked tirelessly to obtain better health care for her two chronically ill and...
Daniel Carpenter in NY Times: Move the FDA out from under politicians
I'm no expert on the FDA but my science antennas are twitching nervously about this, so I'll post and invite discussion. In a surprising move last week, President Obama and HHS Secretary Sebelius overrules (basically, vetoed) the FDA's recommendation to make "Plan B"...
Nancy Finn: Personalized medicine and participatory medicine intersect
There's no stopping an idea whose time has come. SPM member Nancy Finn (@NFinn8421), in the process of her own odyssey as a health care thinker, had an epiphany that strongly echoes the principles of the growing P4 Medicine movement ("predictive, personalized,...
Michael Millenson: When the patient’s wish was irrelevant
We're thrilled to welcome well-known quality and safety authority Michael Millenson as the newest member of the Society for Participatory Medicine. Here is his first guest post, referring back to his popular article in our Journal. He illustrates how recently the...
