I’ve been chronically ill since I contracted a viral infection in 2001. Were I to recover, I’d take these six hard-earned lessons with me into the land of the healthy. 1. Less is more. I used to be an accumulator. My life was filled with stuff: books and magazines that sat unread; CDs; jewelry; knickknacks and trinkets; clothing and all its accompaniments (shoes, belts, scarves). Since becoming sick, I’ve learned that less ...

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Current efforts of clinicians, hospitals and researchers to make health care more "patient-centered" include inviting some of us to advise on research priorities, care organization and delivery under the assumption that, as patients, we understand what patient-centered outcomes and care are. These invitations and our acceptance of them often result in confusion and disappointment for everyone, regardless of good intentions. What do patients know about the inner workings of ...

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I moved to Florida three months ago to take a job as a primary care nurse practitioner in a clinic for the underserved and uninsured. This position followed four years spent as a home-visiting nurse practitioner working with high acuity, chronically ill patients in the Boston area.  I didn’t realize it would be such a transition to go back to taking care of patients in the clinic setting after spending ...

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January of 2010 initiated me into the life of a chronic pain patient. For sixteen months I plunged into a diagnosis journey that brought with it ten misdiagnoses by eleven respected physicians, fifteen procedures and tests, twenty-two medications and crushing pelvic pain. People have asked me if I am angry about it all; the misdiagnoses, prolonged pain, time spent, needless tests and sometimes painful procedures. Anger is not the presiding feeling, ...

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Once upon a time, I was a newspaper journalist: I chased down sources and sweated over deadlines. Then, in mid-career, I switched to doing marketing and communications for a regional healthcare system. This consisted of a large hospital and many outpatient clinics, including a community cancer center. Because I handled communications work for the cancer center, I also had a seat on the cancer committee -- an oversight group of oncologists, ...

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For at least two decades doctors, caregivers, the people they care for, and advocates have deplored the term patient or have been exposed to the arguments of those who deplore it. “Patient” has few defenders in an age in which Western consumers of health care insist on an equal voice in the management of their afflictions, and loathe ceding all power to those who are dispensing relief. This blog recently ...

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Much is being made of the meaningful use requirement to use secure online messaging to communicate with patients about relevant health information. The new Stage 2 measure requires that more than 5% of unique patients seen by the eligible professional during the reporting period were sent a secure message using the electronic messaging function of certified EHR technology. But to meet that goal, we have to get our patient population engaged ...

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I am not a disease. Although when I enter your hospital, or office, or outpatient center, you may refer to me as one. You may lump me together with an odd set of symptoms, or signs. You will define me with those antiquated terms. You will pretend that you will know how I, my body, will react when placed under certain stressors. You will prescribe treatments for my disease, and yet ...

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Incorporating patient preferences into evidence based medicine Remember the figure-ground drawing from psychology 101 that demonstrates (ahem) "how edge assignment designates perceptual groupings?" I always just thought it was cool how you could look at the picture of a vase and blink and -- whoa, Nellie -- now you saw two people face-to-face. I'm concerned that the frantic drive toward evidence-based medicine as a strategy for quality improvement and ...

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There’s an elephant in the room, one that’s preventing patients from getting the most out of their visits to the doctor -- and the name of that elephant is embarrassment. It’s not unusual to feel uncomfortable about some of the more intimate aspects of your health, but too often this discomfort turns into outright embarrassment.  This embarrassment can lead to omissions, which in turn make it impossible for your doctor to ...

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