e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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Chapter 5 of the e-Patient White Paper is E-Patients as Medical Researchers. It details how, in the absence of sufficient medical data for their cases, patients and parents have conducted extraordinary research, time after time, often stunning the medical...
Health 2.0 / Ix Conference: What About Minority Representation?
As you have seen in my last post I have really enjoyed the conference. Exhilarating is the best way to describe the feeling. But I am a white male in his early 50s. That makes me, statistically, the equivalent of the majority of attendees at the conference. And so I...
Patients first. Doctors second.
An Op-Ed piece at the healthcare blog, written by 2 MDs from Harvard Medical School is pretty clear! For those of us who believe the time has come for participatory medicine, the following quote is particularly interesting: Empowering patients should be the first step...
Health 2.0 meets Ix: The Rise of the Patient Voices
I have been following with real interest the notes and discussions about the Health 2.0/Ix conference that took place in Boston last week. I am not willing to get involved in this discussion because in some ways I think it missed the most important aspect of the...
An e-Patient is Born: Elyse Chapman’s story
One of the key learnings of my first year as a student of the e-patient movement, studying how healthcare is evolving, is this: People get radicalized when it gets personal. This is one such story: it's the e-patient awakening of a long-time personal friend of mine....
Mobile could be a game-changer – but only for those who get in the game.
Original title: Health 2.0 meets Ix: Susannah Fox's presentation Here are my prepared remarks for the "Navigating the New Health Care Delivery System" segment at the Health 2.0 meets Ix conference (with the lines I added to respond to other themes brought out during...
The Parable of the Wicked EMR
(guest post by David Kibbe)
Preface by e-Patient Dave: This is a story of bad data gone wild, wrong info that spreads. It starts with a story from the 1600s, which applies all too aptly to our EMR situation today, in which there are inadequate controls on data quality, and errors that leak can...
Applying Participatory Principles to EHRs/PHRs
Neither health professionals nor patients can do it alone. Let's make no mistake: We are here to participate and to help! e-Patient Dave original story of the health data transfer from his hospital EHR to Google Health PHR is remarkable in many ways and shows why...
Completing my list of billing code errors
This post will complete (I hope!) the list of errors that I discovered in the billing data that forms part of my medical records. The original post is here. As I said in the the previous post, “Let me make clear, I personally have only one agenda: to empower, equip...
Globe follow-up on my hospital’s decision to stop transmitting billing data as clinical history
Today's Boston Globe reports Beth Israel halts sending insurance data to Google. I commented: I'm the patient in question. In her original piece 4/13, Globe writer Lisa Wangsness did a terrific job of accurately capturing both the details of this complex story and...
Medicine Goes Digital: Special Report from the Economist
It couldn't have been published at a better time! The economist has a new special report on health care and technology. It states: "The convergence of biology and engineering is turning health care into an information industry. That will be disruptive [...] but also...
Remembering Doc Tom
I never knew "Doc Tom" Ferguson; he died three years ago this week, April 14, 2006. That was nine months before my diagnosis and 21 months before I discovered the movement that he founded. That team, with later additions, is here. Tom, I think of you often....
