Health Literacy is defined in the Institute of Medicine report, Health Literacy: A Prescription to End Confusion, as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions."
Health literacy requires a complex group of reading, listening, analytical, and decision-making skills, as well as the ability to apply these skills to health situations. For example, it includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor's directions and consent forms, and the ability to negotiate complex health care systems.
More recent definitions focus on specific skills needed to navigate the health care system and the importance of clear communication between health care providers and their patients. Both health care providers and patients play important roles in health literacy. The number of different definitions for health literacy demonstrate how the field has evolved.
Definitions of Health Literacy
“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.”
"The term 'health literacy' means the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services in order to make appropriate health decisions."
(Patient and Affordable Care Act of 2010, Title V)
Health literacy is the use of a wide range of skills that improve the ability of people to act on information in order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills.”
Health Literacy in a Cultural Context
Recognizing that culture plays an important role in communication helps us better understand health literacy. For people from different cultural backgrounds, health literacy is affected by belief systems, communication styles, and understanding and response to health information. Even though culture is only one part of health literacy, it is a very important piece of the complicated topic of health literacy. The United States Department of Health and Human Services (HHS) recognizes that "culture affects how people communicate, understand and respond to health information."
There is a move toward "patient-centered" health care as part of an overall effort to improve the quality of health care and to reduce costs. Individual patients and providers need to work together to ensure effective communication. Patients need to take an active role in health related decisions and develop strong health information skills. Healthcare providers need to utilize effective health communication skills. Health educators need to write printed and Web-based information using plain language.
Skills Needed for Health Literacy
Patients are often faced with complex information and treatment decisions. Patients need to:
- Access health care services
- Analyze relative risks and benefits
- Calculate dosages
- Communicate with health care providers
- Evaluate information for credibility and quality
- Interpret test results
- Locate health information
In order to accomplish these tasks, individuals may need to be:
- Visually literate (able to understand graphs or other visual information)
- Computer literate (able to operate a computer)
- Information literate (able to obtain and apply relevant information)
- Numerically or computationally literate (able to calculate or reason numerically)
Oral language skills are important as well. Patients need to articulate their health concerns and describe their symptoms accurately. They need to ask pertinent questions, and they need to understand spoken medical advice or treatment directions. In an age of shared responsibility between physician and patient for health care, patients need strong decision-making skills. With the development of the Internet as a source of health information, health literacy may also include the ability to search the Internet and evaluate Web sites.
Prevalence of Low Health Literacy
According to the Agency for Health Care Research and Quality Report, Health Literacy Interventions and Outcomes: an Update of the Literacy and Health Outcomes Systematic Review of the Literature, low health literacy is linked to higher risk of death and more emergency room visits and hospitalizations. Health literacy may not be related to years of education or general reading ability. A person who functions adequately at home or work may have marginal or inadequate literacy in a health care environment.
People with low health literacy use more health care services, have a greater risk for hospitalization, and have a higher utilization of expensive services, such as emergency care and inpatient admissions. (IOM, 2004)
Vulnerable populations include older adults, immigrant populations, minority populations, and low income populations.
Reasons for limited literacy skills include:
- Lack of educational opportunity -people with a high school education or lower
- Learning disabilities
- Cognitive decline in older adults
- “Use it or lose it.” Reading abilities are typically three to five grade levels below the last year of school completed. As a result, people with a high school diploma, typically read at a seventh or eighth grade reading level.
The relationship between literacy and health is complex. Literacy impacts health knowledge, health status, and access to health services. Several socioeconomic factors impact health status. Literacy impacts income level, occupation, education, housing, and access to medical care. Poor and illiterate people are more likely to work under hazardous conditions or be exposed to environmental toxins.
Economic Impact of Low Health Literacy
In addition to the effects of low health literacy on the individual patient, there are economic consequences of low health literacy to society. According to the report Low Health Literacy: Implications for National Health Policy "Low health literacy is a major source of economic inefficiency in the U.S. health care system." The report estimates that the cost of low health literacy to the U.S. economy is between $106 billion to $238 billion annually. This represents between 7 percent and 17 percent of all personal health care expenditures. To put this in perspective, the cost represents an amount equal to the cost of insuring every one of the more than 47 million people who lacked coverage in the United States in 2006. Improving health communication reduces health care costs and increases the quality of health care.
Initiatives to Improve Patient Communication
Low health literacy was once viewed as an individual patient's deficit-that is, a patient's lack of knowledge and skills regarding health issues. We now recognize that health literacy is a "systems issue" (Rudd, 2010), reflecting the complexity of both the presentation of health information and navigation of the health care system. (Parker, Ratzan, 2010)
The Joint Commission, the group that accredits and certifies health care organizations and programs in the United States, stresses the importance of health literacy, health communication, and cultural competencies as an element of quality health care. In their report, What Did the Doctor Say?: Improving Health Literacy to Protect Patient Safety, the Commission states:
Health literacy issues and ineffective communications place patients at greater risk of preventable adverse events. If a patient does not understand the implications of her or his diagnosis and the importance of prevention and treatment plans, or cannot access health care services because of communications problems, an untoward event may occur. The same is true if the treating physician does not understand the patient or the cultural context within which the patient receives critical information... The Joint Commission's accreditation standards underscore the fundamental right and need for patients to receive information - both orally and written - about their care in a way in which they can understand this information.
These landmark reports helped move health literacy from an "under-recognized silent epidemic to an issue of health policy and reform".
Research Findings on the Impact of Low Health Literacy
Below are just a few of the conclusions from studies on health literacy and outcomes.
- People with low health literacy have a lower likelihood of getting flu shots, understanding medical labels and instructions, and a greater likelihood of taking medicines incorrectly compared with adults with higher health literacy. (Bennett, 2008)
- Individuals with limited health literacy reported poorer health status and were less likely to use preventative care. (Nielson-Bohlman, 2004)
- Individuals with low levels of health literacy are more likely to be hospitalized and have bad disease outcomes. (Baker, 2002) and (Schillinger, 2002)
- Inpatient spending increases by approximately $993 for patients with limited health literacy. (Howard, 2004)
- After controlling for relevant covariates, lower health literacy scores were associated with high mortality rates within a Medicare managed care setting. (Baker, 2007)
- The annual cost of low health literacy to the U.S. economy was $106 billion to $238 billion. (Vernon, 2007)
- Low literacy adversely impacts cancer incidence, mortality, and quality of life. For example:
- Cancer screening information may be ineffective; as a result, patients may be diagnosed at a later stage.
- Treatment options may not be fully understood; therefore, some patients may not receive treatments that best meet their needs.
- Informed consent documents may be too complex for many patients and consequently, patients may make suboptimal decisions about accepting or rejecting interventions. (Merriman, Betty, CA: A Cancer Journal for Physicians, May/June 2002)
- Among primary care patients with Type 2 diabetes, inadequate health literacy is independently associated with worse glycemic control and higher rates of retinopathy. Inadequate health literacy may contribute to the disproportionate burden of diabetes related problems among disadvantaged populations. (Schillinger, 2002)
Role of the Consumer Health Librarian
Many consumer health initiatives are geared towards technological access to health information or rewriting existing health materials at a simpler language level. Both of these approaches are important, but limited. Easy-to-read materials and access to technology are only pieces of a process that must be placed in a larger community context.
This may take the form of providing space for meetings, providing health literacy materials, or actively developing health literacy programs. Consumer health librarians can promote awareness of health literacy among health professionals by creating clearinghouses of health literacy information, sponsoring health literacy seminars, and encouraging multi-organizational collaborations.
The National Action Plan for Health Literacy identifies the following strategies for health information and library professionals to contribute to health literacy:
- Help to train all health care staff in the principles of health literacy and plain language.
- Create collections or repositories of materials (e.g. insurance forms and instructions, informed consent and other legal documents, aftercare and medication instruction, and patient education materials) in several languages and review the materials with members of the target population.
- Help to disseminate existing communication tools and resources for patients.
Consumer health librarians can also support the direct needs of health information consumers by providing materials that are multilingual, culturally appropriate and easy-to-read, and by developing methods and materials to teach consumers how to evaluate health information resources, especially those found on the Internet.
Agency for Health Care Research and Quality (AHRQ). 2011. Health Literacy Interventions and Outcomes: an Update of the Literacy and Health Outcomes Systematic Review of Literature, 2011
American Medical News. Gerontologists outline how doctors can bridge communication gap with older patients
Bennett IM, Chen J, Soroui JS, et al. The contribution of health literacy to disparities in self-rated health status and preventive health behaviors in older adults. Annals of Family Medicine, 2009, May-Jun;7(3):204-11.
Centers for Disease Control and Prevention. Older Adults: Why Is Health Literacy Important?
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Howard DH, Sentell T, Gazmararian JA. Impact of health literacy on socioeconomic and racial differences in health in an elderly population. Journal of General Internal Medicine, 2006, Aug;21(8):857-61.
Institute of Medicine and Nielsen-Bohlman, L., Panzer, A. M., Kindig, D. A., Health Literacy: A Prescription to End Confusion
Joint Commission. (2007). What did the doctor say?: Improving health literacy to protect patient safety. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations.
Kutner, M., Greenberg, E., Jin,Y., and Paulsen, C. (2006). The Health Literacy of America's Adults: Results From the 2003 National Assessment of Adult Literacy (NCES 2006-483).U.S.Department of Education.Washington, DC: National Center for Education Statistics.
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Parker R, Ratzan SC. Health Literacy: a second decade of distinction for Americans. Journal of Health Communication, 2010:15(Suppl 2)20-33.
Rudd, R. Improving Americans' health literacy. New England Journal of Medicine, 2010; 363(24):2283-85.
Schillinger D, Grumbach K, Piette J, et al. Association of Health Literacy With Diabetes Outcomes. Journal of the American Medical Association. 2002;288(4):475-482. doi:10.1001/jama.288.4.475.
United States Department of Health and Human Services.Office of Disease Prevention and Health Promotion. Quick Guide to Health Literacy Fact Sheet: Health Literacy Basics.Retrieved December 29, 2016.
Vernon, J. A., Trujillo, A, Rosenbaum, S, (2007). Low health literacy: Implications for national health policy.
Weiss, B. D., American Medical Association., & AMA Foundation. (2007). Health literacy and patient safety: Help patients understand. Chicago, Ill: AMA Foundation.
Williams, M. V., Baker, D. W., Honig, E. G., Lee, T. M., & Nowlan, A. (January 01, 1998). Inadequate literacy is a barrier to asthma knowledge and self-care. Chest, 114, 4, 1008-15.
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