e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Woman Loses Health Insurance Due to Facebook
Imagine a world you live in where every insurance offering is accompanied by a creepy set of Big Brother-like ongoing investigations into your life. Everything will be used as evidence against you. Yes, even your Facebook profile. That world is here. Well, not right...
The Pew Internet/Health FAQ
A big part of my job, and one I love, is answering questions, mostly from reporters. Sometimes I have just the data or insight someone needs, often I recommend someone else. Here is a sample of frequently-asked questions and my current answers. Please add your...
A Mission 2 End Diabetes
I like to invite all students, teachers, researchers, and entrepreneurs within the ‘earshot’ of this announcement to ‘listen’ carefully. If you have an idea (conceptual or a working model) of a way to help educate, treat, and/or diagnosis diabetes in rural areas with...
ICMCC: Perhaps the single most valuable e-patient info site
In last weekend's post about "patients want all their data" I said I wished I'd known about the article (published mid-May) during last summer's health data debates in Washington. Incredible Dutch e-patient Lodewijk Bos tweaked me, saying he'd posted it the day it was...
Participatory medicine and health data rights on NPR
NPR's Morning Edition story, "Patients Turn to Online Buddies for Help Healing," combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I've written and read...
MITSS: Much-needed support after medical errors
Ten years ago this week, 11/18/99, Linda Kenney was scheduled for ankle replacement surgery. She woke up three days later in the ICU. Her chest had been cut open. She was in the hospital ten days. And nobody talked about what had happened. What had happened is that...
From Ted Eytan’s blog: “Now Reading: Patients actually want their entire medical record”
An important study just got my attention. Patients and clinicians in different cities were asked questions about concerns and preferences. Titled "Insights for Internists: 'I Want the Computer to Know Who I Am',” the study reports: (emphasis added) Patients do keep...
#FDASM: + ca change, + c’est la meme chose
The FDA is holding a public hearing on the "Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools." There is a tremendous amount of buzz on Twitter and blogs about this meeting which will hear 60 speakers, some more than once. As ABC...
From incurable to “We can now call you cured”: Cheryl Greene’s story
Here's another true e-patient story from one of our team. Cheryl Greene is third from the left in the banner at top of this blog. She's a long-time friend of our founder "Doc Tom" Ferguson, a board member of the Society for Participatory Medicine, executive producer...
Regina Holliday’s “73 cents” story on NPR
An interview Regina Holliday appeared yesterday on NPR's All Things Considered. More on this later, but I want to get it posted.
Why Participatory Medicine?
For most people, their impetus to be actively engaged in healthcare comes from an experience with serious illness—either their own or a loved one’s. My journey into participatory medicine began during my internal medicine residency at Boston City Hospital, a public...
Tell the FDA the whole story, please
I scan menus for keywords (fig, parsnips, salmon...) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality...) So when I saw Jonathan Richman's tweet the other night, I couldn't...
