Our doctors speak at least two languages: English and Medicalese. Medicalese sounds like English but is sprinkled with terms from ancient and classical languages that can sound foreign to even the most educated person. To doctors, the language of medicine is clear and familiar. To you, it might as well be Greek. Not just to you, but also to policy makers, journalists, and insurers—all those who are supposed to convey information so that can you understand it and can act upon it.
It's Greek to me too.
I was once consulting for a pharmaceutical company that wanted to increase patient adherence to rheumatoid arthritis medication. We were in a sleek conference room, sipping the latest in gourmet coffee. I was feeling confident and competent. Then the marketing and product teams started throwing strange terms at one another — like code words to a secret club to which they all belonged. Someone said, "anti-TNF." Someone else retorted, "subcutaneous." From across the room I heard, "biologic" and "biosimilar." These words sounded familiar, but that only made matters worse, because then I thought I understood them.
This presented a dilemma. On the one hand, I had been hired because of my academic credentials, industry experience, and unique insights. I should have been commanding authority, not standing at the club door, embarrassingly ignorant of the secret code. On the other hand, I could not do my work unless I knew what my clients were talking about. To find my way out of the predicament, I said, ever so humbly, "My PhD is in psychology, not medicine, so I don't quite understand. Would you mind explaining?"
I needed to ask. Patients also need to ask when they don't understand something their doctor is saying. I used my academic credentials to avoid what I feared would be professional humiliation and thus saved face. Crucially, such credentials are something patients often don't have. Creating an environment in which we feel safe to ask questions is the first step in improving our health literacy.
Ninety million American adults are estimated to have low health literacy. Functional literacy is the ability to use reading, writing, and computational skills well enough to meet the needs of everyday life. With health, this includes our ability to read and understand information, to follow treatment instructions and regimens, to provide our doctors with information about our symptoms and medical history, and to inquire about the treatments they offer.
Health literacy actually falls on a spectrum; people don't just have "high" or "low" health literacy, and not every one of us can perform every health task. Here is how well we perform with functional health literacy:
- Only 12 percent of the US adult population has the highest proficiency level of health literacy. They can, for example, use a table to calculate their share of health insurance costs for a year.
- About half the population has an intermediate level of health literacy. Though unable to use the insurance table described for the first group, they can still read the instructions on a prescription label and determine when to take a medication.
- About a quarter—21 percent—of the population has a basic level of health literacy. Though they cannot read instructions on a prescription label and determine when to take their medication, they can read a pamphlet and give two reasons why a person with no symptoms should be tested for a disease.
- At the lowest, below-basic level of health literacy is 14 percent of the population, who cannot perform any of the tasks above. Still, they can read a set of short instructions and identify what they are allowed to drink before a medical test.
Regardless of your health literacy level, you can get sick, need plenty of meds, face exorbitant out-of-pocket fees, or have debilitating chronic health conditions. You need to figure out whether to get tested for colon cancer if you're over fifty and whether it's okay to have a few beers if you're on an antidepressant.
You can get sick at any age. Functional health literacy decreases with age, and does so faster than other aspects of cognitive ability. This has consequences: seniors with inadequate health literacy are 50 percent more likely to die than are those with adequate health literacy, even after accounting for education and socioeconomic status.
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Health literacy also involves both social skills and advanced cognitive skills to critically analyze information. The skills are interconnected, yet different. For instance, interventions have increased the functional health literacy levels of immigrants, but not necessarily their social or critical-thinking health literacy levels. People still needed help asking questions and reviewing materials critically, even when they could read the materials. If patient involvement is dough, the social and critical-thinking aspects of health literacy are the yeast that make it rise.
You probably know why people don't ask questions. I had to muster up the courage to ask for explanations in my meeting with the pharmaceutical company. (TNF stands for "tumor necrosis factor," a substance in the body that causes inflammation.) Patients have it harder. Patients might be paying customers, but that does not erase the power and knowledge imbalance between them and their health-care providers. On top of the pain and fear that come with illness, "patients with limited health literacy might not feel empowered to speak up or ask questions; they might be self-conscious, embarrassed, or deferential."
Low-literacy adults ask fewer questions than do patients of higher literacy levels. They are also less likely to request additional services or seek new information. In hand-surgery clinics, for example, patients of adequate health literacy asked significantly more questions about their therapeutic regimen and had longer visits than patients of limited health literacy. With the help of interventions that build their skills and confidence—for example, when physicians encourage patients to ask questions—patients can participate effectively in their care, achieving better health outcomes and better care experiences at lower costs. Only a third of the hand surgeons asked patients if they had questions, but when they did, about 80 percent of their patients actively participated.
Excerpted from "Your Life Depends on It: What You Can Do to Make Better Choices About Your Health" by Talya Miron-Shatz. Copyright © 2021. Available from Basic Books, an imprint of Hachette Book Group, Inc.