by Heather White, Community Health Improvement Coordinator; Columbia Pacific CCO
Two of the most common questions asked during a visit with a health care provider:
“Do you understand?”
“Do you have any other questions?”
These standard questions are meant to give us as patients room to advocate for ourselves. Unfortunately, if you didn’t understand something or you do have questions, it can be hard to put them to words, especially if it’s the end of the visit and everyone is kind of in a rush to end the appointment. Ultimately, this can lead to your frustration and can even have negative effects on health. What if the thing you don’t quite understand is how and when you need to take a medication for your heart condition or diabetes? What if you weren’t quite satisfied with the answer to your question about what you can do to manage your pain aside from medications?
Or another scenario: You’re filling out all the forms at your provider’s office, and half the words are complete gibberish to you. Do you ask for help? Do you say you forgot your reading glasses even if they’re sitting in your purse? The forms are meant to help your provider narrow in on what you might need. For anyone who may not be familiar with medical terms, or who may struggle with reading, this can be more stressful than helpful in the moment.
These are just two examples of why health literacy is important.
Health literacy is defined as the degree to which a person has capacity to obtain, process, and understand health information and services needed to make health decisions. It is measured using a few very standard questionnaires, but the most commonly cited scale for measuring larger populations measures from “below basic” to “basic” to “intermediate” to “proficient” health literacy. Only 12% of adults have “proficient health literacy,” which really just means that nearly 90% of us do not have the understanding of medical terms needed to manage our health by ourselves. Two things to keep in mind based on that information:
First and foremost, there is zero shame in struggling with medical terms. You’re not alone if you do-in fact, you’re part of the majority. And if you’re among the14% of adults who have “below basic health literacy,” that’s still nearly 30 million people. It is very possible to be your own advocate by learning more terms, but also by asking lots of questions and being prepared for your visits.
Education, age, ethnicity, first language, annual salary, and health status are all factors that can add up to either poor or good health literacy, but having lots of education and money alone don’t make a person health literate. I’ve met people with PhDs working at universities who have to ask extra questions about what certain words mean or what those words mean for their health. I’ve met people who make a fair amount of money who have the same struggles. I have also met people who live on very little means and have maybe a GED but over time (and often out of need) are experts with health terms.
It is also important to remember that health is also very cultural. Some people in the United States were raised calling diabetes “sugar.” There are cultures that believe that epilepsy, a brain condition that leads to seizures and other health complications, is a spiritual gift rather than a health condition. Medical terms also change over time, so older adults or even professionals who went to school over 15 years ago may or may not be familiar with terms like “substance use disorder” or other terms that have changed more recently. It would be unfair to assume that we all somehow end up with the same vocabulary and understanding of health. Health literacy is important for our health and our relationships with our providers, but as with everything, it is an ever changing and complex issue.
So what can I do?
The best tip I can give anyone who struggles with medical terms is to prepare, prepare, prepare. Pre-write your questions and concerns, even if they don’t seem related to each other. Bring someone with you if you struggle with memory or so that you have someone to check your understanding with later. Bring all your prescriptions with you to an appointment. If you can’t ask your provider about your medications during the appointment, ask your pharmacist. Always ask if something is covered by your insurance before setting it up so you don’t get surprised later. Your provider is there to help you be as healthy as you can be.
The best tip I can give to providers, is to ask open-ended questions and assume people won’t understand medical terms. Ask your patients to repeat what you’ve told them in their own words rather than if they understand or have questions. Ask them what their plan is for implementing the directions you gave them. Most importantly, don’t assume that someone understands medical terms, no matter how they appear or if you know they are educated or well off. Every person has a different range of health education, and different places use different words. Meeting your patients where they are on health literacy makes it more likely that they can leave your office confident in their ability to follow advice, take their medications, and will greatly increase not only their overall experience, but yours as well.