11045478_742642892507962_670861048466897224_n I can’t tell you how many people have flung this Facebook item at me since last night, starting with my wife. It’s already approaching 25,000 shares. Listen, people: Googling does not mean I think I’m a doctor. It’s a sign of being an engaged, empowered “e-patient.” I partner with great doctors -- I don’t tell them what to do. And they welcome me doing it. I personally am completely ...

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Feminism is the radical notion that women are people. - Marie Shear Recent speaking clients know that I often note the parallels between the patient movement and other cultural revolutions: the women’s movements, civil rights, gay rights, disability rights. (I mention disability issues less often, but it was disability advocate Ed Roberts who said in the 1990s, after years of struggle: “When someone else speaks for you, you lose.”) As anyone who’s heard me ...

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In the business of medicine, one of the brightest hopes is the potential for re-optimizing our spend around what patients want. That’s important because decades of research in the field of shared decision making have shown that when there’s a range of options to treat a condition, informed patients choose less spending and less invasive treatment. That’s a good thing. Unfortunately, the University of Chicago press release ...

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Science seeks certainty. The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction. Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) ...

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A recurring theme on e_Patients.net is the need for empowered, engaged patients to understand what they read about science. It’s true when researching treatments for one’s condition, it’s true when considering government policy proposals, it’s true when reading advice based on statistics. If you take any journal article at face value, you may get severely misled; you need to think critically. Sometimes there’s corruption (e.g. the fraudulent vaccine/autism data reported ...

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One of our purposes e-Patients.net is to help people develop e-patient skills, so they can be more effectively engaged in their care. One aspect is shared decision making. A related topic, is understanding the challenges of pathology and diagnosis. Both posts teach about being better informed partners for our healthcare professionals. I’ve recently learned of an another topic, which I’m sure many of you know: practice ...

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Our colleague Susannah Fox of the Pew Internet & American Life Project has done much research about trends in mobile, particularly about health. In contrast, Meeker focuses on overall big trends. She sees aspects I’ve never noticed, like what-all constitutes mobile: when I hear the term, I think handheld phones (iPhone, Droid, Blackberry), but she makes the case that mobile web access (and other wireless) is much more than phones. As we ...

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TEDMED is a truly extraordinary conference in San Diego, a fall sibling of TED talks focused on medicine. TED talks are just 18 minutes long, chosen and designed to blow your mind. They don’t all hit that level, but many do. True to form, the opening session was a mind-blower. 26 year old Charity Tillemann-Dick stepped out on stage and belted out a soprano aria. I thought that was it – an opening ...

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This item has nothing to do with OpenNotes itself – it’s what I’m seeing now that I’ve started accessing my doctor’s notes. In short, I see the clinical impact of not viewing my record as a shared working document. Here’s the story. In OpenNotes, patient participants can see the visit notes their primary physicians entered. Note – primary, not specialists. I imagine they needed to keep the study design simple. So, ...

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It’s widely rumored that a health IT industry executive was unhappy about suggestions that systems have to be usable in the eyes of employees who use them while caring for us. (Us. The patients. Your mother.) According to the rumor, the exec said, “Over my dead body.” As if he ran the agency. Whether or not the rumor’s true it’s not funny. So when I was asked to represent the patient perspective ...

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