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Center for Health Literacy Promotion Blog

“Health Illiteracy” is Not a Disease

Sometimes iPhone helps too much;  so we inadvertently retweeted this, and then the retweet was favorited: Health Illiteracy-- a disease that also afflicts doctors...  I would not intentionally repeat this phrase. I hope you won’t either. Here’s six reasons why:
1.  The term “health illiteracy” focuses on patients’ deficits and places patients in a position of failure and incompetence. This approach generates anxiety and resistance in patients and calls up their defenses. It disempowers patients while requiring that they be active decision-makers and participants in their care.
2.  The term “health illiteracy” equates lack of medical and healthcare vocabulary -jargon-  and disease knowledge with illiteracy and all the stigma that goes with it. It situates in the patient systemic problems in healthcare  (indecipherable & conflicting information, inefficiency, high costs, poor outcomes); so that when treatment is successful doctors get credit, and when it’s not, patients get the blame.
3.  “Health illiteracy” is neither a disease nor an affliction.  This metaphor further tips the power imbalance. it implies health illiteracy is a problem that patients have and doctors need to treat or manage. It cements the notion that patients cannot grasp doctors’ specialized knowledge or use it for their personal benefit; so that an “appropriate health decision” is equated to compliance. And non-compliance is framed as cognitive deficit or irresponsibility.
4.  Here is the first definition of “disease” produced by a Google search: “a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors.... The metaphor adds stigma to stigma implying cognitive deficits and disabilities, rather than underdeveloped skills, poor quality education, inexperience with the healthcare system, or poor communication and complex, concept dense, jargon laden, overly technical information.
5.  An “affliction” is defined as a condition of pain, suffering, or distress. Most      adults who scored in the Basic or Below Basic levels on the  2003 National      Assessment of Adult Literacy reported that they read well. They are not “afflicted”until the enter the healthcare system.
6.   The tweeted blog is titled “Screening-illiterate physicians may do more harm than good”, which a tweeter translated to the comment that health illiteracy afflicts doctors as well as patients.
The blog bemoans that many doctors are “functionally illiterate regarding basic screening concepts”  This language conflates  functional literacy with knowledge. Functional literacy (the 3Rs) refers to  skills used to gain knowledge.  Lack of a particular set of  knowledge, does not indicate inability to read or to learn.
Conversely, “functionally illiterate” means having reading and writing skills insufficient for ordinary  practical needs. Any one who got into medical school can read and write.  If they do not understand screening concepts, that says more about their educators than about their cognitive ability.  Further,framing lack of knowledge as functional illiteracy -inability to gain knowledge - is as          disempowering to doctors as it is to patients. 
I agree with the blog authors’ conclusion that more attention needs to be paid to improving physicians knowledge (not their literacy) about screening tests in order to reduce use of ineffective tests that expose patients to potential harm -- especially health literacy tests.
More attention also needs to be paid to increasing understanding of literacy and health literacy.
Here’s the blog:

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