Health literacy is defined as an individual's ability to find, process, and comprehend the basic health information necessary to act on medical instructions and make decisions about one's health. Many studies have documented the degree to which most written health information and instructions exceed the literacy skills of the majority of Americans. Likewise, verbal communication from health care providers is frequently too complex to be understandable to patients. These discrepancies can have profound patient safety implications, as noted in a previous PSNet Perspective. Errors in care and adverse events associated with health literacy include mistakes in diabetes management; taking the wrong dose or mixing up medications; errors in dosing medications for children; incorrect use of inhalers and aerosol medications; falls; delays in receiving treatment, surgery, or tests; and wrong procedure or wrong site surgery. Moreover, the complexity of modern health information and management can be difficult for anyone to process.
In 2004, The National Academies of Science, Engineering, and Medicine (then known as the Institute of Medicine) published a landmark report calling for action to address health literacy and explicitly linking health literacy to the quality domains of patient safety, patient-centered care, and equitable treatment. AHRQ simultaneously released its first evidence report on health literacy (since updated) in a joint press conference with the Institute of Medicine report. According to the Institute of Medicine, health literacy is a function of systems within and beyond health care, and it involves interaction between the individual patient and the health care system, as well as other social, cultural, and educational factors. The report noted that many adults cannot read complex texts at all and will have serious difficulty navigating the health care environment. The only nationally representative survey of health literacy, conducted in 2003, tested adults' ability to use printed health information. It found that over a third—77 million Americans—had basic or below basic levels of health literacy, 53% had an intermediate level, and only 12% had a proficient level of health literacy.
Reading, in and of itself, is an important health literacy skill. Low reading levels may compromise interactions with health care providers and lead to safety problems. In a compelling American Medical Association Foundation video, actual patients explain their reading difficulties, their fears of their reading limitations being discovered, and the lengths they go to in order to cover their inability to read. However, health literacy involves more than reading—it also includes the ability to write; fill out forms; listen, ask questions, and follow directions; do basic math; keep track of information over time; engage in maintaining health and managing conditions; and participate in shared decision-making. Health literacy is affected by many factors, including socioeconomic status, culture, and language.
Health literacy is not necessarily static, but can vary with a person's mental or emotional state, illness, and life stressors. Furthermore, health literacy depends on both an individual's skills and the complexity of health information and the tasks needed to manage health. Thus, anyone—regardless of background—can experience limitations in health literacy. This fact, combined with controversies regarding conducting literacy testing in health care environments, led to a Universal Precautions approach to health literacy. In this approach, clinicians and health care systems assume that all patients are at risk of not understanding medical information, and they communicate with patients in ways anyone can understand. This approach involves:
- Creating a shame-free environment: All patients should feel welcomed and comfortable at each stage of the health care encounter—from the telephone, to the reception area, to the finance area, and finally to the examination, procedure, or inpatient room.
- Simplifying information: Communicate clearly with plain language and visual cues, such as models, pictures, or videos. Limit discussion to 3–5 key points. Written materials should be at a 4th to 6th grade level, use short sentences and simple words, provide evidence-based instructions, and include pictures. The Centers for Medicare and Medicaid Services has a toolkit to support development of effective health information material and AHRQ has a tool to assess already developed patient education materials.
- Listening carefully: Avoid interrupting patients when they are speaking and use words the patients use to describe their health or illness in discussion of health and medical planning.
- Confirming comprehension: Use a teach-back or show me method. For example, ask patients how they will take their medication tomorrow or how they will explain their treatment to their family or friends. Do not ask, "Do you understand?" as most patients will automatically say yes.
- Improving support for navigating health care contexts: Design signage, forms, websites, and apps from a health literacy perspective. Assist patients with accessing the care they need (e.g., making referrals easy) and with understanding health care bureaucracy and cost.
- Supporting patients in their health management efforts: Provide simple guides for medications and other health self-management practices. Reinforce what patients are doing well, and partner with them to develop strategies that will help them achieve goals safely.
In 2007, The Joint Commission stated, "The safety of patients cannot be assured without mitigating the negative effects of low health literacy and ineffective communications on patient care." Just as we have shifted from a focus on the individual to the function of the entire system as the locus of patient safety, experts have also long recognized that a systems approach is needed to address health literacy. Health literate health care organizations integrate health literacy into all aspects of their mission, structure, operations, planning, evaluation, measures, patient safety, and quality improvement in order to meet the needs of all while avoiding stigmatizing anyone.
The Department of Health and Human Services has issued a National Action Plan to Improve Health Literacy, with seven goals that prioritize many of the areas discussed above. Comprehensive health literacy implementation toolkits are available from the Agency for Healthcare Research and Quality and from Unity Point Health. A number of emerging health literacy interventions are being tested, from modified medication labels to various ways of using visual information to improve communication. However, the concept of taking a systems approach to health literacy has not yet penetrated many health care organizations or become fully integrated into safety and quality frameworks. Many experts recommend that organizations and practices should engage in health literacy self-assessment and make health literacy part of the fabric of their safety and quality programs.