Addressing Health Literacy

More than 30% of US adults have low personal health literacy, defined by the US Department of Health and Human Services (HHS) as the degree to which individuals are able to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. A pooled analysis of 99 studies conducted from 2000 to 2019 in European Union member states reported similar results.¹ Personal health literacy is influenced by the clarity and effectiveness with which clinicians and organizations—including health care systems, insurers, and public health services—communicate the information necessary for people to understand and use health information. Organizational health literacy is defined by the HHS as the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. For example, providing patient instructions in simple, nonmedical language delivered by staff trained to confirm comprehension in a nonjudgmental way demonstrates an organization’s health literacy.

Health literacy may be especially challenging for patients if the information provided is too difficult for them to understand or if they are seeking services with unfamiliar or confusing steps. Use of medical jargon, public health websites that are difficult to navigate, and complex insurance benefit systems undermine health literacy.

Advancing health literacy requires teaching health-related skills so that people can convert that knowledge into effective action. Some skills, such as navigating health information online, are relevant for all patients, while others, such as inhaler technique for patients with asthma, are more patient specific.

Health literacy may determine health outcomes by influencing how people access and utilize care, interact with clinicians, and engage in self-care.² For example, a 2022 meta-analysis of 15 observational studies found individuals with more proficient health literacy skills were more likely to undertake guideline-concordant cancer screening than individuals with lower health literacy skills (breast cancer screening [n = 17 528] adjusted odds ratio [aOR], 1.73 [95% CI, 1.27-2.36]; cervical cancer screening [n = 18 777] aOR, 1.64 [95% CI, 1.30-2.09]; colorectal cancer screening [n = 30 278] aOR, 1.25 [95% CI, 1.12-1.39]).³ In a study of 275 patients, those with adequate health literacy asked more questions compared with those with lower health literacy (6.4 vs 3.9 questions; P = .002),⁴ and in a study of 1460 patients, those with adequate health literacy were more likely than those with lower health literacy to take prescribed medication as instructed (75.8% vs 58.4%; P < .001).⁵

Low health literacy disproportionately affects individuals with lower educational attainment and of lower socioeconomic classes, as well as racially and ethnically minoritized individuals, older adults, and those with cognitive impairment.⁶ Such findings have been observed in nationally representative studies of health literacy and general literacy, such as the 2023 Program for the International Assessment of Adult Competencies (PIAAC), which included 16 414 US households with respondents aged 16 to 74 years.

In both cross-sectional and longitudinal studies, low health literacy has been consistently associated with poorer understanding of self-care for chronic diseases, inadequate treatment adherence, worse health status, greater risk of hospitalization, and death.⁷ A review of 19 cohort studies (N = 41 149) that followed patients for a period of 3 months to up to 8 years, reported that low health literacy was statistically significantly associated with an increased risk of death (hazard ratio, 1.25 [95% CI, 1.15-1.35]).⁸

Clinicians

Clinicians should communicate in straightforward, simple language, avoiding speaking too quicky or overwhelming patients with information (Table). Engaging patients with open-ended questions, such as “What questions do you have?”, encourages patients to engage in their health care. Proactively confirming comprehension improves the likelihood that patients have the information necessary to manage their health effectively. For example, data from 5 studies of 394 patients with chronic obstructive pulmonary disease or asthma showed that confirming comprehension decreased misuse of metered-dose inhalers compared with a brief educational intervention (16.4% vs 74.6%).⁹ The “teach-back” technique asks patients to explain key elements of their care plan in their own words. With a query such as “I want to make sure I communicated clearly. Please tell me how you are going to [take this new medicine]?”, clinicians can assess a patient’s understanding and correct misunderstandings. In 19 of 20 studies, this approach significantly improved patient comprehension in a wide range of settings and populations.¹⁰

Table.

Recommendations to Advance Health Literacy

Principle	Actions
Interpersonal
Clear communication	Avoid jargon (“your test showed no cancer” vs “your biopsy was benign”) Use simple sentence structure Use analogies that relate to patients’ lived experience
Be specific	Use clear, action-oriented statements Aim for unambiguous language (“take 1 pill by mouth every 12 hours” vs “take twice a day”)
Find your learner	Assess the patient’s understanding and gauge explanations accordingly Avoid long exposition and periodically confirm understanding of information
Actionability	Focus on action steps the patient should take (“call this number today to make an appointment”) Specify actions patients can take in the near term
Try not to overwhelm	Limit the amount of information provided Minimize information about anatomy, physiology, or abstract concepts Focus on 2-3 key messages
Use multiple forms of communication	Illustrations can convey complex information or explain procedures (review images with the patient) Videos or interactive programs may also be useful Get patient feedback to ensure such materials are effective Reinforce with verbal and written summaries
Elicit questions	Create an environment where patients ask questions (“what questions do you have for me?”) Patients leaving encounters should always be able to answer the question “What do I need to do?”
Confirm comprehension	Use the teach-back technique to confirm and reinforce critical information “It is my job to explain this clearly. Please tell me the plan for X.” Focus feedback on aspects not understood Reevaluate comprehension and provide additional feedback until mastery has been exhibited
Organizational
Simplify	Make information and services easy to find, understand, and use Remove health literacy barriers from all aspects of the patient experience Have individuals with low health literacy test materials (eg, signs, forms, website) and other forms of communication (eg, email, phone, MyChart messages)
Standardize	Integrate health literacy into strategic/operational planning, quality improvement, and goals Prepare the workforce to address health literacy issues in a stigma-free manner Monitor progress and reinforce training as needed
Support	Leadership makes health literacy integral to its mission, structure, and operations Add support (eg, education, navigation) for people in vulnerable circumstances (eg, polypharmacy, severe illness, care transitions, cancer treatment, housing insecurity) Add support (eg, care management) for patients who are having difficulty with self-care

Screening

There is insufficient evidence to recommend screening for health literacy because it has not been shown to be effective at reducing adverse health outcomes. In a single randomized controlled trial, patients with type 2 diabetes older than 30 years who spoke English or Spanish and screened positive for low health literacy (N = 182) were randomized to an intervention group in which their physicians were notified of their low health literacy vs a control group, in which physicians were not aware of their health literacy. At follow-up immediately after the study visit or within 1 week by phone, there was no difference in patient self-efficacy (self-efficacy scores, 12.6 vs 12.9; P = .60). Additionally, there was no significant difference between the intervention and control groups in glucose control (change in hemoglobin A_1c compared with baseline) at 2- to 9-month follow-up.

Health Care Systems

Health care systems should provide clear, plain-language (6th-grade level) print and multimedia health information in communications with all patients. Initiatives such as the Agency for Healthcare Research and Quality’s Health Literacy Universal Precautions Toolkit provide evidence-based guidance with 23 tools on how to make health information easier to understand and the health care system easier for patients to navigate. Initiatives advancing organizational health literacy focus on a range of techniques, including integrating health literacy into strategic and operational planning, quality improvement, goals, and measures.

Conclusions

Addressing and mitigating the effects of low health literacy are important to ensure that individuals understand health prevention, have skills to manage their medical conditions and medications, and undertake behavioral measures to optimize health outcomes.