Personal Health Literacy

Originally published in July 2017 by researchers at the University of California, San Francisco. Updated in August 2023 by Deb Bakerjian, PhD, RN, APRN, FAANP, FGSA, FAAN. PSNet primers are regularly reviewed and updated to ensure that they reflect current research and practice in the patient safety field.

Health literacy can be thought of from three perspectives: personal, organizational, and digital.¹ Organizational and digital health literacy highlight the importance of organizations in making information understandable to the public. This primer focuses on personal health literacy, which is defined as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others”.² It has been documented that a significant amount of written health information and instructions exceed the literacy skills of most Americans.³ This primer updates what is known about personal health literacy and sets a foundation for the organizational and digital health literacy primers.

Background

In 2004, The National Academies of Science, Engineering, and Medicine (NASEM, then known as the Institute of Medicine or IOM) 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.⁵ 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 healthcare, 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.⁶ This survey, however, only tested people’s ability to understand and use written health information, including numbers. But health literacy also includes other skills, such as being able to understand spoken information, describe symptoms and side effects, negotiate treatment plans, search for and evaluate health information, and navigate the healthcare system to access services.

Subsequently, NASEM implemented several workshops that brought experts together to focus on different aspects of health literacy; summaries of those works have been published by the NASEM including measuring health literacy,⁷ new innovations in health literacy research,⁸ how health literacy impacts public health and health care reform,⁹ and the importance of people’s ability to understand and use numeracy¹⁰ (mathematics) in making health care decisions. Each of these reports emphasizes the importance of the need to not only understand verbal instructions, translate numbers such as in laboratory test levels, but also to be able to read and understand the written materials provided by health care providers.  Low reading levels, in particular, often compromise interactions with health care providers and may 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.¹¹

Poor health literacy can have profound patient safety implications, as noted in this  PSNet Perspective. Examples where poor health literacy resulted in errors in care and adverse events include medication errors, communication errors, patients with serious conditions including diabetic ketoacidosis and end stage renal disease. Moreover, the complexity of modern health information and management can be difficult for anyone to process.⁴

Personal 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 at various times in their life. This fact, combined with controversies regarding conducting literacy testing in health care environments, led to a universal precautions approach to health literacy.^12,13 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. Health literacy universal precautions¹⁴ involve organizational health literacy strategies that will help patients to achieve health literacy:

• Ensuring all patients 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 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 Agency for Healthcare Research and Quality (AHRQ) has a tool to assess already developed patient education materials.
• Communicating clearly and 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. The Agency for Healthcare Research and Quality (AHRQ)  has an excellent resource for teach-back.
• Improving support for navigating health care contexts: Design signage, forms, websites, and apps¹⁵ using health literacy strategies. 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.

Strategies to Improve Personal Health Literacy

Efforts to improve personal health literacy include interventions in K-12 and in adult education. There are also programs that teach health knowledge – such as how a specific disease affects the body. Strictly speaking, these efforts only fit the definition of a health literacy improvement program if they teach the underlying skills needed to manage health or obtain healthcare, and not just medical facts. For example, effective self-management support includes teaching the patient and their family or caregiver skills such as how to monitor and respond to symptoms, develop and follow up personal action plans in response to worsening symptoms, as well as problem-solving and decision-making skills.¹⁶ Training and tools on how to communicate at healthcare visits can increase personal health literacy. These tools include AHRQ’s Question Builder so that patients can select questions they want to ask before their healthcare visit. The Question Builder is available online as well as an application in English or Spanish. The National Institute on Aging also has materials to build skills for healthcare encounters.

Improving internet skills is another way to improve personal health literacy. People with limited health literacy are less likely to use a patient portal, an important tool in health education and self-management. In one study, in-person training on how to use patient portals increased patients’ portal usage and satisfaction.^17,18 Similarly, teaching people to search for health information online and to evaluate the trustworthiness of the information is another personal health literacy improvement strategy. For example, the National Library of Medicine offers a tutorial Evaluating Internet Health Information.

Current Context

Health literacy remains a national priority and is a foundational principle and overarching goal of the Healthy People 2030 action plan that includes objectives to improve health literacy and multiple strategies for achieving them. This is an acknowledgement that improving health literacy – both personal and organizational – is essential to achieving all of Healthy People’s objectives. Healthy People 2030 recognizes personal health literacy as a social risk that is associated with poor health care and health outcomes. However, Healthy People 2030 also notes that assessing personal health literacy at any given point in time for the purpose of targeting interventions to individuals has limitations. Measurement tools can lack precision and as noted above, personal health literacy skills can fluctuate.

Improving organizational health literacy, however, can overcome those limitations. Therefore, health care providers must integrate a health literacy approach to care in all health care settings including acute care hospitals, skilled nursing facilities, home health agencies, and ambulatory care settings as well as care in patient’s homes. If organizations can improve their health literacy, people living in communities they serve would be able to more easily find, understand, and use information that help them with health-related decisions and actions for themselves and others. Unfortunately, the concept of taking a systems approach to health literacy is still a work in progress. To advance the work, experts strongly recommend that healthcare organizations and practices should engage in health literacy self-assessment and make health literacy part of the fabric of their safety and quality programs.

Deb Bakerjian, PhD, APRN, FAANP, FGSA, FAAN
Co-Editor-in-Chief, PSNet
Associate Dean for Practice & Clinical Professor
Betty Irene Moore School of Nursing
UC Davis Health
dbakerjian@ucdavis.edu

References

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