“I don’t really talk about it, but no, I never learned how to read.”
Three weeks into clinical clerkship, I (Nick) cared for a patient in the emergency department who my team planned on discharging. His condition had improved appreciably, so we arranged follow-up with the relevant specialists and were ready to send him home. However, as I handed him the referral forms, I couldn’t shake a nagging thought from my mind: When I had asked where he lived, he couldn’t spell the name of his street or his building. After some probing, I learned that he was illiterate. He had immigrated to Canada as a young adult and never had the opportunity to learn how to read. If we had discharged him without knowing about his literacy status, there’s a good chance he would have missed his follow-up and eventually been re-admitted to the emergency department, simply because he was unable to read the referral form and patient education materials.
Patient literacy is often taken for granted. And yet, 17 percent of adult Canadians read at or below the lowest proficiency level, at which point they can only understand basic vocabulary and simple texts. Despite this, an approach to assess patient literacy is not taught at most medical schools. Last year, we had the opportunity to work with the Toronto Public Library’s adult literacy program, where we interviewed dozens of individuals who read at the lowest proficiency level. Our objective was to gather enough information to design and evaluate patient education tools targeted to the needs of this group.
No more than two minutes into our first interview, we were asked: “I have back pain, how do I fix it?” This was followed by a deluge of questions from every participant on an array of topics ranging from personal medical problems to what causes heart attacks. Every time we visited a different site, this experience was repeated. When we asked participants why they didn’t present these questions to their physicians, they told us things like, “My doctor doesn’t have time to talk about this” or “I don’t go to the doctor often.” Similarly, participants were rarely able to access information online or in books, as they found that online sources were “all just medical terms” or that they simply “couldn’t read well enough” to use available resources.
The health care system can exacerbate this problem. For example, when health care practitioners provide instructions to patients, they often do so in the form of a written list or a detailed pamphlet. When patients receive medications, the dosing guidelines are written on the bottle. While practitioners often also provide verbal instructions, they may be difficult to retain or delivered hastily, leaving patients with low literacy reliant on the written instructions that they may or may not be able to understand.
Low literacy leads to worse health outcomes. One study showed that individuals with low health literacy—which refers to a combination of reading abilities and numerical abilities, such as understanding medication doses—had poorer outcomes than people with better literacy across a host of categories, including an increased risk of hospitalization, increased use of emergency care, and increased likelihood of having depression. In elderly individuals, those with low health literacy had poorer overall health status and a higher mortality rate. Even after controlling for variables such as income and education, both of which are likely contributors to literacy level, individuals with low literacy had lower vaccination rates and lower screening rates for breast cancer than the general population. Similar effects were observed when examining the impact of a patient’s literacy on their ability to take medications: Patients with lower literacy were less likely to identify and properly take their medications, and likely to misunderstand the instructions on the bottle.
Unfortunately, addressing the negative impacts of illiteracy on health is challenging for multiple reasons. First, it is difficult to identify those who have low literacy, as they are often embarrassed and attempt to mask their abilities. Also, one’s literacy is substantially influenced by multiple social factors, including income and education. As such, it would be difficult to improve literacy at the population level without first targeting its upstream contributors on a broader scale. For the time being, health care providers need to focus on mitigating the impact of low literacy on their patients. While a multitude of approaches exists, ranging from the Rapid Estimate of Adult Literacy in Medicine (REALM) to teach-back methods, the evidence for their efficacy is unclear. UpToDate’s series of patient education materials tailored to different literacy levels are excellent resources that practitioners can distribute to patients.
In our work at the Toronto Public Library, we have taken one such approach by designing medical information sheets about recognizing and preventing various conditions. The sheets are formatted as one page handouts about common topics such as food allergies, decreasing heart attack risk, or recognizing the symptoms of a heart attack. The conclusions from our interviews were that effective information sheets have few, simple words paired with illustrations, straightforward designs, and required few inferences. In terms of design, info sheets with simple two-column tables that had words adjacent to a corresponding illustration were more easily understood than those with more aesthetically pleasing but more complex designs. While visually stimulating design is important in any graphic, simplicity must take precedence. We are in the process of evaluating these fact sheets’ effectiveness, and if successful, they will be distributed throughout the Toronto Public Library system and other social service and health organizations in the city through the Metro Toronto Movement for Literacy.
That night in the emergency room, the utility of my experience with the adult literacy program became evident: It heightened my awareness of low literacy and allowed me to identify it in one of my patients. Rather than rely on the referral forms, I explained the patient’s follow-up instructions verbally, asked him to repeat them in his own words to ensure he understood, and then wrote them down in straightforward language that he assured me he could read. Sometimes I wonder what happened to him after he left the hospital; did he truly understand the instructions I gave him and attend his appointments? Most often, I wonder what will happen to him the next time he needs medical care. Will his literacy issues be recognized? Will he be followed-up? And if not, will there be any medical consequences?
The authors would like to thank Dr. Reena Pattani for her support and assistance with this piece.