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e-Patient Dave

I couldn't agree more that there's a spectrum of patient desires, and IMO any real definition of "care" must take into account what EACH patient feels it means to "take care of me."

This is an important step forward, IMO, in our thinking about participatory medicine, which the Society http://participatorymedicine.org defines as "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 partners." Some of my colleagues there, and friends in the shared-decision-making community, feel strongly that the patient MUST decide - but I think that's being paternalistic about ending paternalism! :)

People in the movement have different views; mine is that I want a manager of my care team, someone who coordinates everything and monitors that things are being done well - to my knowledge this role simply doesn't exist today, and it nearly harmed my own case five years ago. (Why the insurance industry hasn't demanded this from hospitals, I don't know.) And throughout it all, I want patients and their proxies to be as informed as they want regarding options, risks, probabilities etc.

Yeah, the fragmentation of care delivery is a big Oops, and I hope everyone involved - clinicians, patients, and advocates for all - will get on with fixing it.

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