Ensuring health literacy is not just about giving patients health information, it is also making sure they’re understanding it, processing it, and able to take action on the information they’ve been given.
Research has now shown that health literacy is a stronger predictor of health status than age, income, employment status, education level, or racial/ethnic group. “I really see it as a social determinant of health,” said Linda Fleisher, PhD, MPH, HON-OPN-CG, at the AONN+ 10th Annual Navigation & Survivorship Conference. “As we become more and more focused on understanding these determinants of health, health literacy is a key piece of this.”
What Is Health Literacy?
According to the US Department of Health & Human Services, “health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”
Literacy skills are not only referring to reading, but also writing, numeracy, speaking, and listening, and the scope of the problem is bigger than many realize. About 14% of adults in the United States (30 million) have below basic literacy skills, and another 29% of all adults (63 million) have basic literacy skills. To illustrate these skill levels, someone with below basic health literacy might not be able to circle the date of an appointment on a hospital appointment slip; a person with basic health literacy may not be able to give 2 reasons a person should be tested for a specific disease based on information in a clearly written pamphlet.
The average US adult reads at an 8th-grade level, but 1 in 5 reads at a 5th-grade level. “It’s not that we shouldn’t be using medical terminology—we should—patients need to learn these terms,” said Dr Fleisher, Associate Research Professor at Fox Chase Cancer Center. “But they’re not necessarily going to understand it; we need to explain what we mean.”
Compounding this problem is the fact that most health consent forms and handouts are written at a 10th-grade up to a graduate school level. Furthermore, up to 80% of patients forget what a doctor told them as soon as they leave the office, and almost half of what they do remember is remembered incorrectly. There is a big disconnect between the average American’s health literacy and the health information being disseminated to them, she noted.
Adding to this is the issue of linguistics, and the rising share of Americans who do not speak English at home. In 2000, these households made up 17.9% of the population; by 2007 it was about 20%, and according to the latest data the share is now about 23%, or 66 million people. This is over one-fifth of all people living in the United States.
In 2000, the Office of Minority Health published the first National Standards for Culturally and Linguistically Appropriate Services in Health Care, which provided a framework for all healthcare organizations to best serve the nation’s increasingly diverse communities. “This is a wonderful tool kit,” she said. “It really is about healthcare organizations as a whole addressing these issues of cultural and linguistic standards, not just individual providers. It’s about much more than translators.”
What Is E-Health Literacy?
But health literacy in the digital age requires a slightly different skill set. E-health literacy is defined as “the use of emerging information and communication technology, especially the Internet, to improve or enable health and healthcare.” It refers to a person’s ability to locate, understand, exchange, and effectively evaluate health information from online environments, and then turn that information into knowledge they can use to make health-related decisions.
The majority of people in the United States use personal devices to search for information online, but this information does not always come from a reliable source, nor does it always come from a source that is easily understood by the person accessing it. According to Dr Fleisher, the jury is still out as to whether this immediate access to information facilitates or hinders health literacy.
Identifying and Supporting Patients with Low Health Literacy
According to Kathy Scheid, RDN, OPN-CG, Health Systems Manager at the American Cancer Society, identifying someone with low health or E-health literacy is not always easy or straightforward.
Being able to pick up on cues is crucial. For example, a person who can’t read might say they forgot their glasses or would prefer to read about their cancer treatment when they get home. Asking in a compassionate way if they would prefer for you to explain the material rather than reading it can be effective.
The 3-item screener asks 3 simple questions that can be added to any assessment, and the answers to these questions can help to identify patients with low health literacy.
- How often do you have someone help you read hospital materials?
- How confident are you filling out medical forms by yourself?
- How often do you have problems learning about your medical condition because of difficulty understanding written information?
And if there is only time to add 1 question to an assessment, she recommends asking “How confident are you filling out medical forms by yourself?” Research has shown that this question is highly predictive of health literacy.
Another helpful tool is “Ask Me 3.” Encourage patients with low health literacy to ask 3 main questions every time they talk with a healthcare provider:
- “What is my main problem?”
- “What do I need to do?”
- “Why is it important for me to do this?”
Identifying and Addressing Low E-Health Literacy
Assessing E-health literacy starts with asking simple questions. People have different learning styles, so start by asking them how they prefer to get information: print or online (or both). Follow up with questions like:
- What kinds of electronic devices do you have or use? What do you use them for?
- Are you using the patient portal? If not, why? If yes, for what purposes?
- Would you like me to show you how to get this information online? Then, observe how easily they’re able to access online resources on their own with available devices.
Once you’ve identified a patient with limited health literacy, use the teach-back method and ask the patient to explain information back to you in their own words. If you need to clarify or correct their understanding, do so, and then move on, she advised.
Be concise: highlight no more than 3 main points, draw pictures, and use analogies (arthritis can be like a creaky door hinge). Use tangible examples instead of concepts (“Don’t eat hamburgers” vs “Avoid red meat”), and plain language (“choice” instead of “option,” “side effects” instead of “adverse events,” and “harmless” instead of “benign”). She encourages practicing this with coworkers to gain feedback and make sure key points are being clearly communicated. “Just do your best,” she said.
When using printed materials to explain something, start with the simplest brochure, highlight and show the page as you talk, and mark important pages with flags for easy reference later. Instead of asking the patient if they have any questions, ask, “What questions do you have for me?” This normalizes the fact that they will—and should—have questions about what you just told them.
Learn from lessons learned by other organizations. Based on their own experience with patient materials and health literacy, the American Cancer Society learned that bifold brochures are more easily understood by patients than trifolds. Their revised materials now offer easier reading, longer sentence length, and bulleted summaries on the back cover. Many items are available in a 4th- to 6th-grade reading level, and the educational level is noted on each brochure.
According to Ms Scheid, using more than 1 of these methods at a time to communicate with patients will increase the likelihood of them retaining health information.