e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Big, deep Time article on “oversharing” & privacy
@ej_butler (Brisbane's Ed Butler) pointed out an extended online version of "In Praise of Oversharing" from Time, May 31. Thoughty and nuanced, with a healthcare spin.
“If fire were invented today”: empower the young
In my May 5 keynote at the ICSI / IHI Colloquium, one of my slides said "Empower the young." It cited David Blumenthal MD, National Coordinator for health IT at the Dept of Health & Human Services. I'd recently heard him say, "At Massachusetts General I had to get...
Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey
Through the magic of Google Alerts, Diane Engelman recently learned of this blog. She's one heck of an e-patient, though until now she'd never heard the word. That proves patient empowerment is a real trend, driven by a powerful force: the desire to help oneself - or,...
Patients Like Me beats Lancet Neurology by a mile
Patient networks for the win! MIT Technology Review: "Earlier this month, the journal Lancet Neurology published a study showing that the generic drug lithium did nothing to slow the course of ALS ... Eighteen months earlier, PatientsLikeMe, a for-profit patient...
“What I’ve Learned from e-Patients”: Doc Tom and Dan Hoch, 2005
Thanks to the extraordinary Dutch e-patient / expert patient Lodewijk Bos (Twitter), president of ICMCC, I discovered this classic that I didn't know existed. Our founder "Doc Tom" Ferguson died 8 months later so I never knew him, but this piece makes clear that the...
Society’s ICSI keynote makes front page of Star-Tribune
The front page of Friday's Minneapolis Star Tribune has coverage of the keynote address I was privileged to deliver on May 5 at the 13th Annual Colloquium of ICSI (Institute for Clinical Systems Improvement) and IHI (Institute for Healthcare Improvement). The article...
Participant-Entrepreneurs: Innovating Toward Better Health
Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign: On days where I could have benefited from the feedback of [Observations of Daily Living] the...
Frequently Asked (But Unanswered) Questions About E-patients
As I've written before, I love questions. It's an honor to be handed someone's nascent idea and to help them shape it (which is what I think a question really is). But this time I'm asking for YOUR input. These excellent questions were sent to me by Liav Hertsman and...
Patient-centered care: coordination and putting the compliance shoe on the clinician’s foot
The new definition of participatory medicine at the Society's website notes that patients "shift from being mere passengers to responsible drivers of their health, and ... providers encourage and value them as full partners." As with any collaboration, this must...
“Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation.
This is an essay I (mostly) wrote April 28 on Vince Kuraitis's e-Care Management Blog, part of his series with David Kibbe MD about the Federal EMR incentives, titled "Is HITECH Working?" The series is, in my opinion, the most useful update I've seen on this complex...
The Power of Data and the Power of One
I am struck, once again, by the power of data and the power of one. Carlos Rizo, Chief Imagineer of the Health Strategy Innovation Cell, posted this very intriguing tweet on May 2: The power of open data: To find problems in complicated environments, and possibly even...
Health Geek Radio: Adam Bosworth’s Straight Talk Express
Adam Bosworth of Keas delivered quite a lecture yesterday at the Alliance for Healthcare Foundation. He talks about how Americans don't really like data (but they need it), why "frugal innovation" is the best path for start-ups, how e-Patient Dave shook up the EHR...
