e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Input please for ABIM Foundation Forum: Choosing Wisely in an Era of Limited Resources
What is the role of the patient? As we noted in April, TEDMED and the Robert Wood Johnson Foundation have designated "The Role of the Patient" as one of the twenty TEDMED Great Challenges for 2013, and the TEDMED site will host a big conversation about it in the...
About Healthcare’s Online Communities
From Hive Strategies, an interesting blog post talking about the healthcare"intimate public" - the communities that patients with a certain condition form with each other. An important part of being an e-patient is being engaged with others like you - supporting and...
It’s not about being online. It’s about being empowered and engaged – thinking and speaking up.
On Monday Ileana Balcu posted about a great new article by SPM member Eve Harris, whom we've covered before. Eve's post is a superb depiction of how an empowered patient - someone who knows how to think for themselves and speak up - will engage in their case. These...
What Do ‘Engaged’ Patients Do?
Member Eve Harris wrote another great blog post for KQED - Public Media for Northern California. It is about one woman's personal decision on how to treat her breast cancer. A short extract below: Basila is strong evidence that individuals react differently to their...
“What’s in YOUR record?” Make data quality fun: play along in ONC’s video challenge!
Think everything in your medical record is spotless and flawless? Think again: almost everyone I know who's checked their record has found flaws, omissions, orders that were never carried out. There's a lot we can do, e-patients, engaged consumers, to improve the...
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]Â is grounded in...