by Susannah Fox | Jun 2, 2010
Todd Park is determined to make health data hot. He is leading the U.S. Department of Health & Human Service’s effort to make more of their data sets publicly available, from nursing home quality ratings to the food environmental atlas (view the full list of...
by e-Patient Dave | May 26, 2010
As many of you know, a hard part of being in the world of cancer fighters is that sometimes we lose one. I’m sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her...
by Susannah Fox | May 24, 2010
The cross-disciplinary smorgasbord that is Gov 2.0 Expo will be held this week in DC. The agenda is packed with nerdy temptations (danah boyd! Anil Dash! Tim Berners-Lee!) but here are my can’t-miss sessions. Apps for America Contest Winners – Clay...
by Gilles Frydman | May 24, 2010
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...
by e-Patient Dave | May 22, 2010
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...
by Susannah Fox | May 21, 2010
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...
by e-Patient Dave | May 20, 2010
@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.
by e-Patient Dave | May 20, 2010
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...
by e-Patient Dave | May 18, 2010
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...
by e-Patient Dave | May 18, 2010
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...
by e-Patient Dave | May 17, 2010
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...
by e-Patient Dave | May 16, 2010
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...
by Susannah Fox | May 13, 2010
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...
by Susannah Fox | May 11, 2010
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...
by e-Patient Dave | May 10, 2010
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...
by e-Patient Dave | May 8, 2010
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...
by Susannah Fox | May 5, 2010
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...
by Susannah Fox | May 4, 2010
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...
by Susannah Fox | May 1, 2010
“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.” “Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to...
by e-Patient Dave | Apr 28, 2010
The e-Caremanagement blog has released my post that we mentioned last week: “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation. It’s part 5 of their excellent series (really, excellent) “Is HITECH working?” As...
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