Society for Participatory Medicine
e-patients.net blog
general, news & gossip, policy issues, reforming hc
What do YOU think they mean by “health reform”?
After hearing about 800 million mentions of “healthcare reform” in the past couple of months, this weekend I visited my normal (not-HC-geek) family in Maryland for Mom’s 80th birthday. (Woohoo! Large clan descends, six siblings and most of the grandlings.) Inevitably the subject of reform came up, and I realized not everyone is aware of [...]
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Guest post on The Ideal Doctor/Patient Relationship (Kent Bottles, MD)
Guest post by Kent Bottles, M.D., President of ICSI. Preface: The Institute for Clinical Systems Improvement is a Minnesota-based non-profit that “brings together diverse groups to transform the health care system so that it delivers patient-centered and value-driven care.” Needless to say, I like how they think. (Good taste, too – they invited me to [...]
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A Participatory Medicine Story
The nascent field of Participatory Medicine is currently in the ”debating and defining” stage. It has been tentatively defined by the steering group of the Journal of Participatory Medicine as: …a cooperative model of health care that encourages and expects active involvement by all connected parties (health care professionals, patients, caregivers, etc.) as integral to the full continuum of [...]
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Shared Kismet: Wikipedia and the NIH
The National Institutes of Health hosted a Wikipedia Academy today to train scientists, communications staff, and other NIH staffers in how to contribute to what has become a top source for health information in the U.S. (For more details, please see the NIH press release, a Wikipedia project page, and a Wikimedia Blog post.) The [...]
Read Moremedical records, news & gossip, policy issues, reforming hc, trends & principles
Civil rights activist Dorothy Tillman vindicated
a year after arrest for demanding medical records
Important addition 7/16/09 6:40 pm EDT: Be sure to read the HIPAA clarification by commenter “SLC” below, and any subsequent discussion. Dorothy Tillman was requesting her aunt’s records, not her own. This doesn’t change the need (IMO), but it does put a different light on the event. This is a tiny item, which we might [...]
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E-patients in U.S. News
U.S. News & World Report’s Best Hospitals guide features 3 articles of particular interest to e-patients: Getting Medical Advice on the Web from Other Patients Would You Share Your Health Information Online? Great Medicine Needs Committed Patients
Read Morepolicy issues, reforming hc, trends & principles, understanding statistics
I’m sick of hearing Washington talk about savings “over ten years”
I am sick of hearing politicians and money-making parties talk about savings projections “over ten years.” It’s STUPID. We’re stupid if we listen. Nothing (and I mean nothing) happens as projected ten years ago, not even five. It’s fiction; it’s a bogus way to inflate modest figures. This is the same issue as e-patients understanding [...]
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The Economist picks up the meme again
I suspect this has caught the attention of many of our readers, but I’ll emphasize it anyway. The Economist often comments on technology and health-care. Recently, they talked up Health 2.0 a bit. What I was most struck by is the handful of comments. Most focused on how the Economist piece helped emphasize the shifting [...]
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Participatory Medicine at PdF09: Can we get a do-over?
The poli-tech tribe gathered in New York last week for the Personal Democracy Forum and, as Craig Newmark put it, welcomed “our new nerd overlords.” Esther Dyson, Jamie Heywood, Rep. Jerry Nadler (D-NY), and I were asked to take on a breakout panel entitled, “From Participatory Politics to Participatory Medicine: The Coming Revolution in Health [...]
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Dx: Revolting. Rx: Revolt.
Tuesday night, endorsement #906 on HealthDataRights.org came from a Judy Beckman, who says: “I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????” Indeed, why? Whose data is it, anyway? This spring I’ve been learning (slowly) about HIPAA – the immense [...]
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