Can an intelligent person be illiterate? Absolutely, especially when it comes to healthcare. The concept has a name – low health literacy – and in the U.S., it’s an even bigger problem than many people realize.
According to the National Patient Safety Foundation, 90 million Americans (more than a quarter of the population) have some level of low health literacy. While these figures undoubtedly include those who are generally illiterate, it also includes people who are quite literate and motivated to know more about their health.
Medicine is complex and medical knowledge continues to expand in breadth and depth. Doctors also grapple with the enormity of medical knowledge to absorb. The result is fragmentation into ever more focused specialty areas to be able to synthesize and apply that knowledge effectively. Healthcare providers generally have become more specialized over the years in order to focus their expertise and avoid the information overload that can at times hinder, rather than help, care provision. How then does an average person come to grasp his/her own health condition when even the treating providers sometimes struggle to do so?
As an Alabama native and local medical school graduate, I had the opportunity to learn medicine around the same people, in the same culture, with whom I had been raised. Alabama is full of good people, but has a reputation as a state that lags in education. I found, by and large, that my patients wanted to understand what was happening with their health, but didn’t always have the resources. I can understand since it can be scary not knowing the difference between a minor ailment and a potentially deadly disease. Taking the time to explain things in a simplified manner to my patients actually made them better patients.
It goes something like this: “You have an infection called osteomyelitis, which means you have bacteria in your bone. We have to use IV antibiotics instead of pills so we make sure the right antibiotic travels through your blood and gets all the way down into the bone. We need to put a big IV in your arm and you can get your medication at home. It’s really important that you don’t miss a dose and you have to do the whole treatment course for six weeks. If it doesn’t work, sometimes you need surgery to clean out the bone. There’s a small chance – the worst case scenario – that if the antibiotics don’t work, you might have to get your foot amputated. I don’t think that’s going to happen – and we’re going to work hard to make sure it doesn’t – but it’s also important that you take your medications the right way to cure it.”
And with that, my patient says, “Alright, doc. Let’s do it. I’m ready.”
I can’t say that I ever measured myself, but I never really seemed to have a problem with non-compliance or relapse in those patients. A little time spent simplifying a complex, sometimes scary disease saved a lot of time and effort down the line.
My point is really that as the healthcare delivery system becomes more fragmented and medicine becomes more complex, much has been written about care coordination and systems that create a holistic care environment. Patient-centric care has become an industry mantra while patients are also asked to bear a greater burden in their own care. Forgotten in the debate over health reform is whether patients actually have the right knowledge and tools to adequately bear that burden on their own behalf.
What I’ve found over the years is that knowledgeable, motivated patients are empowered to drive their own health outcomes. In an increasingly digitized world, the complexities faced by patients who are drowning in undecipherable information can be simplified through the application of principles related to low health literacy. Simply giving patients access to a portal with some amount of medical and educational information doesn’t begin to actually empower that patient. Patient empowerment really begins with knowledge empowerment. As the old Saturday morning cartoon PSA saying used to go, “knowing is half the battle.”