e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Does this proposed law take “give us our data” far enough?
The ever-vigilant Ted Eytan MD writes: I recommend taking a look at this and seeing if the proposed changes are more patient friendly, or if they go far enough to allow patients to see their health data online. At issue is a bill in the California legislature to...
Clarity is Power: an effective decision aid graphic (Boston Globe)
Last summer I visited Health Literacy Missouri, and summed up the great work I saw there in Clarity is Power. Today's Boston Globe has another example - the illustration at right, what's known as a decision aid, to help patients engage in making decisions about their...
Health Care Hackers
A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers. This was no academic exercise. It was as if...
Ted Eytan: Update on “Gimme My [image] Data” from Group Health
As Meaningful Use rolls out, and providers are required to share data with us, there are a lot of concerns about whether their lives will spin out of control as patients besiege them with ignorant questions. We've discussed this in our many posts about the OpenNotes...
Social Media Breakfast – Healthcare in the Social Media Era
If you are in Boston this Friday, you can attend the Social Media Breakfast. The SPM member Alicia Staley will present the progress of the #bcsm (breast cancer social media) community. Other speakers will be there as well and it only costs $8.00. For more details and...
Facial Paralysis, Not Personality Paralysis
Anyone who has doubts about including patients’ input in research studies should talk with Kathleen Bogart, PhD. She focuses on the social ramifications of facial paralysis, both congenital (like Moebius Syndrome) and acquired (like the often partial facial paralysis...
Nursing Alliance for Quality Care kicks off effort to put the patient relationship at the cornerstone of patient safety and quality
Thanks to member Marge Benham-Hutchins RN, PhD for sending us the link to this RWJF initiative http://www.rwjf.org/qualityequality/product.jsp?id=74596&cid=XEM_A6199 I especially liked this principle: This relationship [nurse-patient] is grounded in...
Caregivers Online
A new Pew Internet/California HealthCare Foundation report is out today: Family Caregivers Online. I thought I'd give some background on why we did the study and a few key take-aways. Caregivers are alpha geeks of health care 30% of U.S. adults are currently caring...
NeHC and ONC organize an eHealth Engagement Summit
Thanks to Keith Boone for blogging about this summit and raising the issue of why NeHC members were notified about this meeting with only four days notice! http://motorcycleguy.blogspot.com/2012/07/pushing-patients-around-not.html
CureTogether acquired by 23andme
Big news today in the health geek world: CureTogether has been acquired by 23andme. For those just tuning in, CureTogether enables people to track and share their personal wellness experiments so that others can benefit from what they learn. 23andme enables anyone who...
Idelle Davidson: “ASCO, Where Have You Been?”
This guest post by Idelle Davidson originally appeared in the Huffington Post as “ASCO, Where Have You Been? The organization that sets standards for cancer care does not include cognitive issues in their patient consent document.” Last month, I was in Arlington, Va....
How American Independence Created a New Kind of Patient
By Michael L. Millenson The empowered patient, skeptical of professional authority, is not a new phenomenon: he was actually created by the American Revolution. Reading through historian Gordon Wood’s Pulitzer Prize-winning book, The Radicalism of the American...
