There is a growing awareness of the importance of health literacy – the extent to which patients and their families are able to understand words we speak and the written materials we provide. This is a good thing, since there is very good evidence that patients who have a better understanding of their condition and recommended treatment feel better, adhere better to recommendations, enjoy better health outcomes and rate the experience of their care higher. Oh, and they also sue for malpractice less frequently. The problem for providers is that it is not easy to get this right.
Aside from the obvious challenge of helping people absorb complex information at a time when they may be under considerable emotional stress, there are often deep cultural divides between patients and providers that we don’t see, don’t understand, or fail to bridge.
There is another problem that has gotten some attention recently. We are often in the position of trying to convey quantitative information to patients – think of the risk of surgery, the likelihood of response to treatment, the chance of a bad outcome without intervention. Turns out that this is really hard.
Often the problem starts with a poor understanding of the actual “number” by the physician. We tend to overestimate the risks of bad outcomes absent treatment, and underestimate the frequency of side effects of treatments. Pretty hard to convey accurately what you don’t know yourself.
Another big hurdle is that some of what we want to convey is inherently complicated, and often uncertain. There is a lot of stuff for which we don’t have good quantitative “point” estimates, and even if we did, the variation around the estimate would reduce its utility for individualized clinical decision-making.
Finally, people in general are not that great at understanding probabilities – call it “innumeracy” instead of “illiteracy.” A recent paper in the Annals of Internal Medicine reviewed the literature on the effectiveness of different techniques for overcoming some of these challenges. They were not able to identify “the best” way to do this, but found that visual aids were helpful and using the concept of the “number needed to treat” was not.
I think this is important and interesting. What do you think?