Information exchange between doctors and patients

Sorry for the straightforward title, I'm not feeling particularly creative or snarky today.

I think it would surprise you how little we really know about what kinds of information doctors give to patients, how they go about it, and how it is understood. Studies of communication between physicians and patients have tended to focus more on interaction process -- the affective, interpersonal and social role dimensions -- than on instrumental communication -- the literal content of information as given and received. Much of the work uses coding systems -- notably the Roter Interactional Analysis System -- that provide only very limited characterization of the subject matter of speech. On of my main projects is to improve on that using coding that separates interaction process from subject matter and allows the subject matter to be coded as specifically as you might want for a given research question.

We do know that in routine prescribing, doctors typically provide very little information. I'm sure it's been your own experience that they pretty much just say, "Take these pills, X times a day." They might mention a possible side effect. I have found that my doctor hasn't bothered to mention issues of major importance that show up on the label, and he certainly doesn't explain how the drugs work. Doctors don't like to mention possible side effects because they are afraid that it will either discourage people from taking the meds, or predispose them to think they are experiencing the side effects when they are not.

I have diagnosed hypertension and hypercholesterolemia, both well controlled by pills. I happen to know a lot about the risks associated with these conditions and something about the mechanisms of action and the side effects associated with the drugs I take, but it's not because my doctor ever explained it to me. He may have just assumed I knew given my profession; I suspect that doctors are afraid of telling people information they might already know because it might seem patronizing. But they don't have the skill to assess people's need for information.

In the case of diagnoses perceived as more serious, doctors do tend to provide more information. However, people are often quite distressed when they first are told they have cancer or HIV or kidney disease, and they just don't absorb what they are told. This is a problem which is well-recognized, but that doesn't mean it is properly dealt with.

More fundamentally -- and this is the issue my latest proposal addresses -- it seems pretty clear that a large proportion of the population just doesn't have the pre-existing conceptual framework on which to hang new biomedical information. We do a terrible job of teaching biology in elementary and high school, and nowadays even college graduates tend to pursue narrow, career-focused courses of study that may omit biology. And by the way, if you want to understand biology you have to understand evolution, which in its modern form that includes the mechanisms of inheritance and the functioning of DNA and the proteome, is the basic organizing principle of all biology. You can't understand cancer, or infectious disease, the immune system, or much of anything else if you don't understand that.

But the fact is, lots of people don't understand what a cell is, how a virus replicates, or how the body regulates essential conditions from blood sugar to blood pressure. So, the doctor may say a lot of words but they don't congeal into a coherent understanding. People may also mishear specific words -- e.g. in one example I encountered "toxic gases" for "toxoplasmosis." Therefore, doctors sometimes resort to vague and possibly misleading metaphors, overly simplistic explanations, or even patently false explanations, just to satisfy people. Sometimes this gets them to do what the doctor wants, so what the heck, right? Sometimes it doesn't.

So the challenge is to learn how to break down essential biomedical information into explanatory models that are accurate, but can be interpreted given people's existing frameworks. You first need to figure out where each individual's starting point is, and then build on it. In general, doctors don't know how to do this.