Map of life expectancy at birth from Global Education Project.

Monday, February 02, 2009

Are you illiterate?

So, NIH is putting a lot of vigorish out on the street, some of which I may just try to collect, to study what they call Health Literacy, by which they mean "the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions." According to NIH, not having enough of this stuff is a serious problem, apparently affecting 90 million adults in the U.S. -- This according to the program announcement I'm reading now. For those of you who have never checked out how the NIH gives away money, you might want to check it out, these are your tax dollars at work.

I think this particular cause is a good one -- we do need to figure out how to help people better understand information that affects their health, including being able to come to the right choices about treatment for them, as individuals. But I do have a problem with the "Health Literacy" frame, which is that it locates the problem in the average patient or citizen who is presumably too dull or ignorant to figure out which end of the fork to hold. While that description does indeed apply to Don McLeroy, D.M.D., I think for most people who don't necessarily grok all the stuff their doctor is thinking when he refers them for a throgsneckbridgectomy, the locus of the difficulty lies elsewhere.

Figuring out how to communicate technical and specialized information effectively to people who might want to know it because of its relevance to their own health is important, and I certainly want people to do a better job at that. But this is really a two way street. The kinds of information that matter in providing health care, treatment decision making, and managing disease aren't just the stuff the doctor learned in medical school that is just way too complicated for you. It includes a lot of stuff you know or care about that the doctor doesn't know and doesn't know enough to care about. The goal should not be to get you to do what the doctor wants you to do, but you're too stupid to know is good for you. The problem is how everybody can work together to come to some sort of a consensus about what is good for you, or to agree to disagree in an open and honest way.

I'm sorry that this is all a bit abstract, but I'm too busy today to anything more than bloviate. Still, if anyone wants to add some concrete examples that seem to be in order I'll be delighted to hear them.


C. Corax said...

This calls to mind the battle I had when I had Lyme disease. I had a series of vile old men who malpracticed on me, but there was one arrogant man, who, I was told, was the point man on staff for Lyme disease. I told him that I had researched online and had spoken to a woman on a statewide commission on Lyme disease and that all indications were that I should have three to four weeks of antibiotic, not just ten days. He rolled his eyes and said, "That's all so political," then tried to tell me I couldn't get deer ticks on me from my dogs. I told him that deer ticks are not species-specific (I was starting to lose my temper by then). He said I wouldn't be able to see them because they are tiny little dot-sized things smaller than the head of a pin. I pointed out that the nymphs might be, but that the adults are considerably larger. I won the day and he extended my prescription, but if I hadn't been ticked off (so to speak) enough to fight back, or if hadn't been reading about ticks for years because of my dogs, he could easily have snowed me. I think that as the man who had been assigned to be the clinic's point man on Lyme, he should have had at least some basic knowledge of the subject.

kathy a. said...

i'll say up front that the "you are too stupid to question my advice" approach is one of my very extremely least favorite approaches from doctors.

you are right to question it as a matter of patient "health literacy," and suggest that communication in a commonly understood language is really important.

i try to do my part, both for myself and for family members [& sometimes friends] i care for. part of that is offering up any history that might possibly be relevant. and part is researching to see what is out there, and the third part is trying to sort the junk info from something that might be useful and accurate.

c.corax has an excellent example of a doctor being a butt-head, ignoring the real information corax had already gathered. that is shameful.

i remain pissed about the neurosurgeon who did not want to tell me details of my mother's stroke [location; size; clot vs. bleeder], and did not tell me things like "she was in a coma; we didn't think she would live in the ER last night; and also she has heart problems and high blood pressure." we fortunately met the orthopedic surgeon, who was more forthcoming. [and it was his job, too; he was advising on risks of major surgery.]

that's kind of a major example, but i think there are minor examples thousands of times a day about poor communications. a lot of health consumers are not versed in medical stuff -- so health literacy is not a total misnomer -- but many doctors could stand to learn something about informing their patients usefully. as in, "informed consent."