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

Background

Health literacy can be thought of from three perspectives: personal, organizational, and digital. 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 according to Healthy People 2030 is defined as “the degree to which individuals have the ability to find, understand, and use information services to inform health-related decisions and actions for themselves and others”.² It is well documented that most written health information and instructions exceed the literacy skills of most Americans.³ 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

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 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.

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,⁶ new innovations in health literacy research,⁷ how health literacy impacts public health and health care reform,⁸ and the importance of people’s ability to understand and use numeracy⁹ (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.¹⁰

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.¹¹ 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:

• 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 by communicating 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 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 apps¹² 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.

Current Context

Health literacy remains a national priority and is a foundational, overarching goal of Healthy People 2030. The National Action Plan to Improve Health Literacy includes seven goals to improve health literacy and multiple strategies for achieving them. The goals are:

1. Develop and disseminate health and safety information that is accurate, accessible, and actionable
2. Promote changes in the health care system that improve health information, communication, informed decision-making, and access to health services
3. Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in childcare and education through the university level
4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community
5. Build partnerships, develop guidance, and change policies
6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy
7. Increase the dissemination and use of evidence-based health literacy practices and interventions.

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. This approach is what enables all people to find, comprehend, and use information that help them with health-related decisions and actions for themselves and others.¹ 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 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
Interim Associate Dean for Practice & Clinical Professor
Betty Irene Moore School of Nursing
UC Davis Health
dbakerjian@ucdavis.edu

References

1. Brach C, Harris LM. Healthy People 2030 Health Literacy Definition tells organizations: make information and services easy to find, understand, and use. J Gen Intern Med. 2021;36(4):1084-1085. [Free full text]
2. Santana S, Brach C, Harris L, et al. Updating Health Literacy for Healthy People 2030: defining its importance for a new decade in public health. J Public Health Manag Pract. 2021;27(Suppl 6):S258-S264. [Free full text]
3. Lopez C, Kim B, Sacks, K. Health Literacy in the United States: Enhancing Assessments and Reducing Disparities. Santa Monica: Milken Institute. 2022.[ Free full text]
4. NHS Health Literacy Toolkit Leeds, UK: Health Education England, Public Health England, NHS England and Community Health and Learning Foundation; December 11, 2017. [Free full text]
5. Azzopardi-Muscat N, Sørensen K. Towards an equitable digital public health era: promoting equity through a health literacy perspective. Eur J Public Health. 2019;29(Supplement_3):13-17. [Free full text]
6. Institute of Medicine. 2009. Measures of Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. [Free full text]
7. Institute of Medicine. 2011. Innovations in Health Literacy Research: Workshop Summary. Washington, DC: The National Academies Press. [Free full text]
8. Institute of Medicine. 2011. Health Literacy Implications for Health Care Reform: Workshop Summary. Washington, DC: The National Academies Press. [Free full text]
9. Institute of Medicine. 2014. Health Literacy and Numeracy: Workshop Summary. Washington, DC: The National Academies Press. [Free full text]
10. Nutbeam D, Lloyd JE. Understanding and responding to health literacy as a social determinant of health. Annu Rev Public Health. 2021;42:159-173. [Free full text]
11. DeWalt DA, Broucksou KA, Hawk V, et al. Developing and testing the health literacy universal precautions toolkit. Nurs Outlook. 2011;59(2):85-94. [Free full text]
12. Emerson MR, Buckland S, Lawlor MA, et al. Addressing and evaluating health literacy in mHealth: a scoping review. Mhealth. 2022;8:33. [Free full text]