Bill Gates recently shared a story with Gates Foundation staffers about a meeting he had with President Donald Trump, in which Trump asked about the difference between human immunodeficiency virus (HIV) and human papillomavirus (HPV). The audience laughed as the billionaire philanthropist said he told Trump “those are things that are rarely confused with each other.” Health Twitter erupted upon hearing the news, mocking the president’s confusion and ignorance.
Trump has tweeted in the past that America needs to “add more dollars to Healthcare,” but perhaps we should focus on improving the health literacy of our political representatives first.
As a physical therapist and assistant professor at Northwestern University’s Feinberg School of Medicine, ― I’ve experienced firsthand how confusing medical terminology can be for patients. An 80-year-old patient of mine once refused to lie on her stomach for a physical therapy exercise out of fear of dying from sudden infant death syndrome; she didn’t know that SIDS only affected infants. I’ve had patients who believed fractures and broken bones were two different things, patients who sought help for “rotary cup” (rotator cuff) tears.
So while it’s frustrating as a health professional to hear that the president doesn’t know the difference between two very different diseases, I understand the confusion. Both viruses can be transmitted through sexual activity, and they are commonly referred to by similar abbreviations.
Nonetheless, such medical misunderstandings are a significant public health problem. Currently, only 12 percent of U.S. adults are proficient in health literacy.
“Being ‘like, really smart’ ... does not guarantee adequate knowledge of often complex medical terminology.”
Health literacy is the extent to which people are capable of obtaining, processing and understanding health information and services in order to make informed health decisions. When a person has poor health literacy, they may have difficulty completing medical forms. They may not grasp how to properly manage health conditions. They may struggle to communicate effectively with health care providers.
Health literacy also encompasses math skills, such as calculating calories or serving sizes from a nutrition label, understanding medication dosages and interpreting blood sugar levels.
And health literacy translates directly into health outcomes. Patients with lower health literacy levels experience greater risk of mortality and in one study were 52 percent more likely to be hospitalized than patients with better health literacy. They also tend to experience higher pain levels and slower recovery after surgery.
Health illiteracy is expensive both for patients and for taxpayers. One report estimates that low health literacy costs the U.S. economy between $106 billion and $238 billion annually. Individuals with low literacy pay up to $8,000 more per year in health care costs compared to those with adequate literacy.
Over the course of my career, I’ve seen countless patients labeled as “non-adherent” for missing appointments or failing to follow medical recommendations. But those with low health literacy are often not ignoring medical advice; they simply don’t understand what they’re supposed to do. The stigma of low literacy can also embarrass patients and makes them less inclined to seek future services necessary to manage their health.
As we’ve seen in recent weeks and years, even those with high levels of formal education can be health illiterate. Being “like, really smart,” as the president once described himself, does not guarantee adequate knowledge of often complex medical terminology.
Take, for example, Mick Mulvaney, Trump’s budget director, who suggested those with diabetes are at fault for their disease because they drink sugary beverages and don’t exercise. In reality, diabetes has multiple causes, including genetics and environmental factors; sugar doesn’t directly cause diabetes.
Our politicians are particularly health illiterate when it comes to female anatomy. Former Rep. Todd Akin infamously said in 2012 that “the female body has ways to shut that whole [pregnancy] thing down,” implying that women’s bodies would somehow automatically stop a fertilized egg from becoming implanted in the uterus after sexual assault. And don’t forget Rep. Vito Barbieri, who didn’t seem to understand that the vagina is not part of the digestive system.
“If we want to truly reform health care, we must start by improving health literacy among all Americans ― from individual patients to the president.”
It’s concerning that those in charge of setting health policy may be ignorant of very basic health facts. If we want to truly reform health care, we must start by improving health literacy among all Americans ― from individual patients to the president of the United States.
One place to begin is by funding programs that support health education. Health classes are not required at many schools, which means many children aren’t being taught basic information about how the body works and the importance of lifestyle interventions, such as physical activity and healthy nutrition. Better education in these formative years can give people the resources to prevent and manage diseases later in life.
Medical schools should also increase the amount of time spent on health literacy education. Current curriculums spend on average only three hours teaching future health care providers how to work with patients with low health literacy, and one survey of health care providers showed 16 percent had received no such training at all. Better education will help doctors and nurses assess and address literacy issues among their patients.
Evaluating health literacy should become a standard part of every medical encounter. Routine literacy assessments will reduce the embarrassment for patients in admitting they don’t know and thereby increase the chances they can ultimately make informed decisions.
As a society, we need to de-stigmatize low literacy levels and educate, rather than laugh, when people are unfamiliar with health concepts. We have to do this even when it’s difficult ― even when the person unfamiliar with basic health concepts is a politician in charge of creating health policy. By reducing the fear and shame around asking questions, we can ensure that people will ask when they need clarification rather than letting their health suffer in silence.
Margaret Danilovich is an assistant professor at Northwestern University’s Feinberg School of Medicine. She’s on Twitter @margaretdptphd.