Many years ago, Alfred Korzybski wrote that "the map is not the territory." Gregory Bateson went on to argue that the map, which represents reality, is not the reality. This distinction has implications for the role of patient voice in health care planning and policy. Today, many organizations are making serious attempts to include the patient voice in policy and decision-making. Unfortunately, more than a few of them are ...

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What can we learn from an experiment conducted on a single person? That is, when the subject population (N) is a single person, aka N=1? How and how much do such findings contribute to knowledge about the experimental intervention? How relevant are results to other patients or populations or diseases? In assessing what is known about a phenomenon, how are these findings treated in comparison to studies with 30 or ...

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Silence -- it's deafening. I look around at this empty apartment and take in the sinking feeling that I'm alone. New Yorkers seem to crave "alone time." I see individuals sitting on park benches all over the city, stealing moments, staring into space, encased in an invisible aura of solitude. It's quite a feat actually to do this amidst the noise and tidal wave of humanity that ebbs and flows through ...

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You may have noticed an uptick in messages from your health plan or clinician notifying you that "You are the captain of your health care team." I have seen them here and here and here and here, for example. My response to this message? Bad metaphor: I am not the captain of my health care team. I may -- on some days -- consider myself a member of that team, should I actually ...

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I’ve learned that people will forget what you said, People will forget what you did, But people will never forget how you made them feel. -Maya Angelou We are often asked, “How can you do that?”  How can you stand to do that work?  Such a dreary subject.  Grim but supposedly necessary.  Don’t you get depressed with all the talk of dying?  Facing death and its consequences every day must be the prime route ...

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When he was five, my son Daniel went through a rough patch with his asthma. Both he and his sister Allison had been diagnosed the year before, when we were living in Colorado. I never knew if it was the fault of the pollution that too often smeared our view of the mountains, or my then-husband's two-pack-daily cigarette habit. Or was it the unspoken shriek of anxiety? After I divorced my ...

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When I first started facilitating a grief support group shortly after moving to New York, my aim was simply to create a supportive environment for members to heal from their grief and to form long lasting bonds of friendship. In the course of five months however, I've begun to wonder whether emotional and psychological healing can be contained into an end goal with a finish line. For the most part, authors ...

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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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