December 9th, 2011 by Elaine Schattner, M.D. in Opinion, True Stories
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Over the weekend I developed another bout of diverticulitis. Did the usual: fluids, antibiotics, rest, avoided going to the ER, cancelled travel plans.
One of my doctors asked a very simple question: is this happening more frequently? The answer, we both knew, was yes. But I don’t have a Personal Health Record (PHR) that in principle, through a few clicks, would give a time-frame graph of the bouts and severity of the episodes over the past several years.
The last time this happened, and the time before that, I thought I’d finally start a PHR. Like most compulsive patients, I keep records about my health. In the folder in my closet in a cheap old-fashioned filing box, the kind with a handled top that flips open, I’ve got an EKG from 15 years ago, an Read more »
*This blog post was originally published at Medical Lessons*
August 16th, 2011 by DavedeBronkart in Opinion
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An SPM member emailed this, with the playful subject line “A New e-Patient”:
(Click the image to go to the high-res on the comic’s site; © Copyright 2011 King Features Syndicate, all rights reserved.)
Funny comic, but it’s a common misconception that “e-patient” = anyone who googles (or bings, or webmd’s, or…). Wrong. E-patients are empowered, engaged, educated etc – not mindless, and not likely to freak out at the first thing they read.
When you search Read more »
*This blog post was originally published at e-Patients.net*
August 5th, 2011 by Jessie Gruman, Ph.D. in Health Policy, Opinion
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“There is a better way – structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace.” Rep. Paul Ryan (R-WI) August 3, 2011
The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service. Two phrases commonly used to describe us convey meanings that mischaracterize our experiences and undervalue our needs: “empowered patient” and “health care consumer.”
As one who has done serious time as a patient and who spends serious time listening to talks and reading the literature that use these words to describe us, I ask you to reconsider their use.
“Empowered patient” The fabrication of the verb “to empower” from the noun “power” was used in the civil rights and community development movements to describe a benevolent bestowal of influence on disenfranchised individuals and groups by those who had previously excluded them. When used in relation to health care, the word perpetuates the idea that we are passive entities, waiting to be gratefully endowed by our clinician or a new policy with the right and ability to act on our own behalf. Our “empowerment” takes place not as a result of our own will or preference, but rather because we have been given permission to act in a different way by some external agent.
This word is Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
July 18th, 2011 by Elaine Schattner, M.D. in Opinion, Research
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Yesterday’s post was not really about Avastin, but about medical journalism and how patients’ voices are handled by the media.
L. Husten, writing on a Forbes blog, cried that the press fawned, inappropriately, over patients’ words at the FDA hearing last week, and that led him to wonder why and if journalists should pay attention to what people with illness have to say, even if their words go against the prevailing medical wisdom.
There’s a fair amount of controversy on this. For sake of better discussion in the future, I think it best to break it up into 3 distinct but inter-related issues:
1. About health care journalism and patients’ voices:
A general problem I perceive (and part of why I started blogging) is how traditional medical journalists use patients’ stories to make a point. What some of my journalism professors tried to teach me, and most editors I’ve dealt with clearly want, is for the reporter to find a person with an illness, as a lead, and then tell about the relevant news, and provide some expert commentary – with at least one person speaking on each “side” of the issue, of course – and then end the story with some bit about the patient and the future.
I argue that this form of medical journalism Read more »
*This blog post was originally published at Medical Lessons*
June 29th, 2011 by Elaine Schattner, M.D. in Health Policy, Opinion
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This is the second in a series of posts on Bending the Cost Curve in Cancer Care. We should consider the proposal, published in the NEJM, gradually over the course of this summer, starting with “suggested changes in oncologists’ behavior,” #1:
1. Target surveillance testing or imaging to situations in which a benefit has been shown. This point concerns the costs of doctors routinely ordering CTs, MRIs and other imaging exams, besides blood tests, for patients who’ve completed a course of cancer treatment and are thought to be in remission.
The NEJM authors consider that after a cancer diagnosis many patients, understandably, seek reassurance that any recurrence will be detected early, if it happens. Doctors, for their part, may not fully appreciate the lack of benefit of detecting a liver met when it’s 2 cm rather than, say, just 1 cm in size. What’s more, physicians may have a conflict of interest, if they earn ancillary income by ordering lab and imaging tests.
My take:
It’s clear that some and possibly most cancer patients get too many and too frequent post-treatment surveillance tests. Read more »
*This blog post was originally published at Medical Lessons*
