Society for Participatory Medicine
e-patients.net blog
health 2.0
positive patterns
Conference Season: Patients and Caregivers Welcome
We are deep into the fall conference season. One of my favorite trends is the increasing rate of inclusion of patients and caregivers at health care events, on stage or in the audience. The California HealthCare Foundation was a pioneer in this regard. Patients 2.0, an off-shoot of Health 2.0, and e-Patient Connections represent a [...]
Read Moregeneral, key people, policy issues, pt/doc co-care, reforming hc, trends & principles
Lab Results for All! Of Data Liberation, Participatory Medicine, and Government 2.0
On September 14, HHS released for comment draft lab results regulations that will, if finalized, effectively bathe the Achilles’ heel of health data in the River Styx of ¡data liberación! Lab results will be made available to patients, just like all other health data. (See the HHS presser and YouTube video from the consumer health [...]
Read Morekey people
Who *are* those guys? (Matt Wiggins and Remedy Systems)
How many times have you been at a conference, listening to some panel, when all of a sudden someone says something that snaps you out of your stupor and you think, “Who *is* that guy?” (And if you’re lucky enough to remember Butch Cassidy and the Sundance Kid, please enjoy the following rendition of that [...]
Read Morepts as teachers
The presence of patients changes public conversations about health care
I’m attending a LOT of conferences this fall and over & over I am seeing the power of having patients in the room. e-Patient Connections was a wonderful and well-documented example (in blogs, on Twitter, plus the large in-person audience) as will be Health 2.0 San Francisco. But the one that turned my head around [...]
Read Morepatient networks
Patient Communities: Which Way Forward?
If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group? This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the [...]
Read Morepatient networks, policy issues
Health 2.0 DC: Passion and Execution at Scale
I think conferences are deeply affected by the spirit of their host city. San Francisco has its hackers and dreamers, Boston has its entrepreneurs and ivy, Paris has its pomp and worldliness. At Health 2.0 DC yesterday, my city showed that it has passion and execution — at scale. Leave it to others to point [...]
Read Morepolicy issues, trends & principles
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 to prevent them from emerging. Clicking through, I [...]
Read Moredemographics, trends & principles
Health 2.0 Europe: A Moveable Feast
Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building. Health 2.0 Europe began, for me, in February, [...]
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The Decision Tree: What to Expect When You’re Expecting a Long Life
Warning: Do not read The Decision Tree unless you’re ready to make some kind of change in your life. Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking [...]
Read Morepatient networks
Privacy can kill, openness can heal
If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his post, The German privacy paradox: I prefer to turn the question [...]
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