e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
“Listening to the Patient Voice” – a Planetree story
I've long been surprised that Planetree.org is not better known by everyone who talks about patient-centered care, patient engagement, etc. I attended one of their webcasts in April and wrote about a great booklet they discussed. I'm taking the liberty of pasting in...
Jonena Relth: Participatory medicine: my first-hand account
Jonena Relth submitted this guest post to share her very positive experience with her surgeon. I was being prepped for surgery last week and my surgeon, Dr. Davies, came in to discuss the procedure. He explained to me that he had reviewed my file several times and...
When Patients Band Together: Far From a Disgrace
When it comes to news sites, I love scanning readers' comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me). One thread caught my eye recently. Ron Winslow wrote a very...
The Journal has just published a commentary by SPM member Kathy Kastner, "My 8-Point Participatory Philosophy: What Makes Me a Participatory Patient." The author describes the "aha moment" when she decided to become a participatory patient and shares the attributes...
Just Say “Know” to Drugs: A Proposal to Improve Prescription Drug Information
Have you followed the long and painful efforts to improve the information prescription drug manufacturers are required to provide us? Really, given that almost half of us in the US take at least one prescription medication daily, you’d think this would be a high...
How To Dump A Doctor
I have known Sharon Anderson for many years and watched her eAdvocacy evolve. A nine year leiomyosarcoma (LMS -- a very rare cancer) survivor, Sharon has tirelessly used her social work skills to help LMS patients directly while actively promoting an increase in...
e-Patient Classic: Elyse Chapman, April 2009
Today I heard from a friend who's had a tumor discovered. S/he decided to fire the current doctor, who would not return phone messages and was "intellectually lazy" - not interested in pursuing ideas my friend brought up that might require some effort but could...
Nancy Finn: E-Visits foster continuum of care and communication, but there is a price
Nancy Finn submitted this guest post about the challenges facing doctors and patients who want to have clinical conversations online. The quest for the right communication formula and balance that will satisfy doctors and e-patients who want to experience continuous...
Australian Consumer Health Forum flips from opt-in to opt-out for EHR enrollment
Big news from Down Under: the Sydney Morning Herald reports that a group of fifty consumer health advocates has unanimously backed an "opt-out" process for enrollment in electronic health records, reversing their previous position. The issue is whether by default all...
Help Me Choose: Sessions at Medicine 2.0
In 2008, I asked for this community's help in choosing which sessions to attend at the Chronic Disease Care conference sponsored by the California HealthCare Foundation. I loved the input I got and wrote 3 posts on what I learned about spreading improvement in care,...
New FDA book: “Communicating Risks and Benefits: An Evidence-Based User’s Guide”
Guest post by SPM member Gangadhar Sulkunte. We posted his family's e-patient story two years ago. The FDA's Risk Communication Advisory Committee has published a PDF book called "Communicating Risks and Benefits: An Evidence-Based User's Guide." It's meant to help...
Rare disease patient community and Mayo explore trial with far-flung patients
SPM member John Novack of Inspire.com sent this, about a project some members of an Inspire patient group created. They got the Mayo Clinic to explore whether a clinical trial can be done in a very unconventional setting: across the internet, instead of within one...
