e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
John Q. Sherman Award in Patient Engagement: Nominations Open
Our Society for Participatory Medicine is a partner with EngagingPatients.org. Founded in 2013, Engaging Patients is particularly focused on the communication aspects of participatory medicine. They asked us to share this announcement. EngagingPatients.org is pleased...
NEJM opens access – discuss! Time for a Patient-Driven Health Information Economy?
A Twitter chat this morning, prompted by SPM member John Sharp, produced a rapid and wonderful change in an ongoing problem: so often articles about patients aren't open to patients. In this case it's an intriguing new article today in the esteemed New England Journal...
Astounding #RareDisease e-patient story: Jill Viles, via @SusannahFox tweets
Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of "Doc Tom" Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew's health research....
2016: Opportunities and Challenges in Health Care
In 2016, mHealth technology will occupy center stage in transforming clinical care and clinical research. Smartphone-linked wearable sensors will turn science fiction into reality as these mobile diagnostic tools provide the in depth information that enables   ...
Individuals’ Rights to Their Health Information: The Federales Awaken
A long time ago (in internet years), the original HIPAA regulations were promulgated. (The final Privacy Rule was published in 2000.) They've been tweaked and updated over the years, most notably in the "mega-reg" promulgated a few years back in order to implement...
Regina Holliday and the Walking Gallery are in AMA Journal of Ethics
One sign of a movement's progress is when the establishment takes notice. This one's a biggie: Regina Holliday's Walking Gallery of Healthcare (Facebook) is in the January 16 edition of the AMA Journal of Ethics. A five page article! Click the image to view it. We've...
Alternative Choices for Healthcare: What are the Options?
I was at dinner with friends recently when I noticed that my right thumb was red, swollen and painful. One of my friends is a biochemist and instructed me to immediately soak the finger in hot water. I continued our social evening dipping my right thumb in and out...
When no other feedback channels exist, the Patient Advocate becomes a single point of failure
This blog welcomes guest posts from SPM members on relevant topics. One of our Society's newest members, Susan Cournoyer, is a tech industry analyst, and is familiar with the concept of systems that are well designed or weakly designed, e.g. with a "single point of...
50 million more patients to get OpenNotes! Huge win for empowered partnership!
Big news: a multi-foundation $10 million grant will spread OpenNotes access to fifty million more patients! Nearly 20% of America will have full access to their providers' visit notes, so they can review them from anywhere! Regular readers know we've always been loud...
KevinMD picks up SPM’s “The truth about that mug” post. Engage.
Funny how a complex cultural discussion can get triggered by something as simple as a coffee mug. In our work to change healthcare's beliefs about the patient-clinician relationship, nothing has had greater impact in less time than our post two weeks ago The truth...
“Patients organise and train doctors to provide better care”: patients writing in the BMJ
As SPM advances the cause of patients as responsible drivers of their care, we sometimes hear denials or complaints from physicians who feel that e-patients needy, uninformed, self-centered burdens on busy clinicians' time. Well, here's a juicy counter-example - in...
NPR Shots: Small Violations Of Medical Privacy Can Hurt Patients And Corrode Trust
One pillar of participatory medicine, as SPM co-chair Dr. Danny Sands often says, is access to our medical records: "How can patients participate if they can't see what I see??" But a major impediment to free-flowing information is incompetence or malfeasance in...
