e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine
It may be time to mention again the definition of Participatory Medicine: Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full...
Donna Cryer’s “I am an e-patient” story: e-patient advocate to the FDA
Meet Donna Cryer - another person who was an e-patient before she ever heard the word. (Weren't we all?) As with Diane Engelman's "mama lion" story this week, we connected with Donna through the internet. I heard her speak last month at the National Library of...
A New Conversation About Health Privacy: Who’s In?
Facebook has sparked a new debate about privacy and I think it's time to bring it to health care. What does it mean when millions of people flock to share/overshare information, even as Facebook's default privacy settings have slowly become openness settings (but the...
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...
