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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...

e-Patients Discover Unrecognized Side Effects

Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don’t detect all the adverse drug effects that may be important. Far too often, serious side effects...

Imagine someone had been managing your data: next anecdote

Next anecdote about poorly managed medical data: Amen! Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was...

The Social Life of Health Information

The Pew Internet/California HealthCare Foundation report, The Social Life of Health Information, is packed with new findings from a survey of 2,253 adults, including 502 cell-phone interviews, conducted in either English or Spanish. We spent a bundle of money on...

“Give us our data”:
my talk at the NeHC board meeting

Last Tuesday, June 2, I was on a consumer panel at a board meeting of the National eHealth Collaborative. This is a heady group to be addressing; as this press release says,  nine of these people are on the advisory committees that are working directly with David...

e-Patients Demand: Put An End To
Data-Hugging Disorder

“Statistics should be the intellectual sidewalks of a society, and people should be able to build businesses and operate on the side of them” This quote from Hans Rosling is part of a speech where he presented the following: Database-hugging disorder (Dbhd): A...

The power of listening and being heard

This is a special occasion for me, a guest post by Dr. Louise Glaser. Louise is a pediatrician in the Kaiser Permanente system, where among other things she’s Chief of Leadership and Communication Development in the Sacramento area. I met her a year ago at the annual...

Another great reason to be a participatory e-patient

The Boston Globe had a brief interview with me last Monday, and commenter “MikeScanlon” gave a great additional reason to go “e”: Doctors are required to respond to a lot of things – health insurance requirements, liability insurance...

Meaningful Use: The Elephant IS In The Room

Comparative Effectiveness:  a  comparison of the impact of different options that are available for treating a given  medical condition for a particular set of patients. Such studies may compare  similar treatments, such as competing drugs, or they may analyze very...

EMRs: “Would you take it if it were FREE?”

Blogger John at the “EMR (EHR) and HIPAA” blog posted a musing that caused my business antennas to twitch. A vigorous discussion has started in the comments. Here’s the thing: we’re talking about the billions of incentives we’re offering...

An e-Patient is Born: Elyse Chapman’s story

One of the key learnings of my first year as a student of the e-patient movement, studying how healthcare is evolving, is this: People get radicalized when it gets personal. This is one such story: it’s the e-patient awakening of a long-time personal friend of...

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