Beyond the Walls: Advancing Health Literacy Where it Matters the Most

After more than thirty years in nursing, I have seen firsthand how the healthcare landscape has evolved, driven by technological advancements, market forces, and an increased focus on patient engagement. Yet, despite all these changes, one fundamental truth remains: health literacy is the foundation of effective healthcare. Without it, even the most innovative treatments and cutting-edge medical interventions fall short.

Health literacy is more than just a patient’s ability to read a prescription label or follow a doctor’s instructions. It is about understanding WHY a treatment is necessary, recognizing symptoms, knowing when to seek care, and having the confidence to make informed health decisions. Unfortunately, the reality is that only 12% of adults in the U.S. are considered health literate (Dhananjeyan & Kumar, 2023); a staggering statistic when one considers that 10.8% of the U.S. population literally works in the healthcare sector (U.S. Census Bureau, 2021). This gap disproportionately affects racial and ethnic minorities, those with chronic illnesses, non-native English speakers, and individuals with lower education levels—all groups that already experience significant healthcare disparities.

When patients struggle to understand their conditions, treatment plans, or the importance of preventive care, the results can be devastating. Misinterpretation of medical instructions leads to medication errors, unnecessary hospitalizations, and poor disease management (Rahman et al., 2020). In fact, research shows that patients with higher health literacy are 50% more likely to adhere to their prescribed treatments, leading to fewer complications and better health outcomes (Berkman et al., 2011). In diabetes care alone, improving health literacy can boost medication adherence by 25%, reducing hospitalizations and long-term health complications. In cardiovascular care, medication adherence improves by up to 40% when patients understand their condition and treatment (Nutbeam, 2000).

Beyond individual health, low health literacy has a massive financial and social impact. Patients who do not understand their treatment plans or how to manage chronic conditions contribute to an estimated $238 billion in additional healthcare costs annually (Shahid et al., 2022). Poor health literacy also undermines public health initiatives, making it harder to manage chronic diseases, control pandemics, and improve mental health care. Additionally, the stress and anxiety that come with navigating a complex healthcare system without proper knowledge further discourage patients from seeking timely medical attention (Chen et al., 2021).

As nurses, we are the bridge between complex medical information and real-world patient understanding. We are not just caregivers—we are educators, advocates, and liaisons between patients and an often overwhelming healthcare system. A well-informed patient is more likely to adhere to treatment, communicate effectively with providers, and make proactive health choices. However, to achieve this, patient education must go beyond handing out pamphlets or providing a one-time explanation during a rushed clinic visit. It needs to be personalized, practical, and continuous.

For over 16 years, I have led teams of nurses delivering in-home patient education within the pharmaceutical industry. This setting provides a unique opportunity to see firsthand the barriers that prevent patients from fully understanding or complying with their health conditions. When nurses engage with patients in their home environment, we can tailor education to their specific needs, address misconceptions in real time, and provide clear, actionable steps for managing their health. This personalized approach is often the difference between adherence and non-adherence, between effective treatment and avoidable complications.

In 2022, a dedicated field clinician was providing ongoing educational support to a patient through both telephonic and in-person interactions. Over the course of three months, during their phone conversations, the patient expressed growing concerns about their health, describing troubling symptoms such as gastrointestinal distress, persistent headaches, and neurological issues, including confusion and dizziness. As these side effects were reported, intermittent treatment disruptions and dose modifications ensued, all working toward the realization that treatment may have to end as a result.

Recognizing the importance of continuous support, the nurse educator scheduled an in-home visit to provide further guidance and reassurance. During this visit, the nurse noticed what she thought could be black mold growth along the lower walls of the patient's dining room. When asked about it, the patient was uncertain as to what it was or the impact it would have on his health.

As a means of prioritizing patient safety and well-being, the nurse informed the patient's healthcare provider (HCP) about the suspicious finding. During the following monthly telephonic education session, the patient shared that their HCP had reached out after becoming aware of the finding and found resources that ultimately confirmed and remediated the black mold issue. Encouragingly, once the mold was removed, the symptoms that had initially caused so much distress began to improve—offering relief and reassurance that their health challenges were not due to disease progression but alternatively, were environmental, and would not have been fully understood or even speculated except for the observations of a nurse in the patient’s home.

Pharmaceutical nurses, in particular, play a critical role in bridging the health literacy gap through education that extends beyond medication administration to include:

• Understanding disease processes and their extenuating factors and how they impact overall health.

• Recognizing and Managing Symptoms and knowing when to seek medical attention.

• Proper dosing and administration strategies, including when to take and when not to take, storage requirements, and whether to take with/without food (and what food).

• Understanding treatment options and helping patients make informed decisions.

• Making necessary lifestyle modifications that enhance long-term health outcomes.

Despite the undeniable importance of health literacy, healthcare institutions often fail to prioritize it, not out of failure to recognize the need but more so out of failure to meet the logistical and time demands for someone to provide it. Education is frequently standardized, rushed, and disconnected from patients’ real-world circumstances. As a result, patients leave medical appointments without truly understanding their diagnosis, medications, or next steps, setting them up for failure. The stress of the office setting can cause patients to clam up; this is especially exacerbated during the initial visit when patients may just be learning about their disease. The shock of this learning can create confusion and panic, leading to an inability to think about what they need to ask the provider.

The reality is that health literacy is not a fixed trait; it varies among individuals and fluctuates based on circumstances, stress, illness severity, and the complexity of medical information. One-size-fits-all education does not work. To truly empower patients, education must be tailored to their comprehension level, delivered in a way that makes sense to them (allowing time for clarification and questions), consistent, and reinforced over time.

Yet, too often, healthcare professionals simply do not have the time or resources to provide this level of personalized education. Overbooked schedules, staffing shortages, and administrative burdens leave little room for meaningful patient engagement. This is why investing in health literacy efforts through dedicated nurse educators, community outreach, and pharmaceutical nurse programs is essential.

Health literacy is not just about education—it is about patient autonomy, equitable care, and better health outcomes. When patients understand their health, they are no longer passive recipients of care; they become active participants in their well-being. As nurses, healthcare leaders, and patient advocates, we must push for systemic change and ensure that health literacy becomes a central focus in healthcare delivery, not an afterthought. This means:

1.     Expanding nurse-led educational initiatives to reach patients where they are.

2.     Investing in personalized patient education rather than generic materials.

3.     Addressing health literacy disparities within vulnerable populations.

4.     Integrating health literacy training into nursing and medical curricula.

The truest meaning of healthcare is more than just treating a disease—it is about the patient as a whole being and empowering them with knowledge so they can take control of their health. Florence Nightingale once emphasized that "the first requirement in a hospital should be that it should do the sick no harm." Today, failing to prioritize health literacy is a form of harm, one that leads to poorer outcomes, increased healthcare costs, and preventable suffering.

By intensifying our focus on health literacy, we can create a stronger, healthier, and a more informed society. It is time for the healthcare system to fully recognize the power of education as a tool for healing. Through commitment, collaboration, and compassion, we can ensure that every patient, not just the privileged few, has the knowledge and confidence to take control of their health.

References

Berkman, N. D., Sheridan, S. L., Donahue, K. E., Halpern, D. J., & Crotty, K. (2011). Low health literacy and health outcomes: An updated systematic review. Annals of Internal Medicine, 155(2), 97-107. https://doi.org/10.7326/0003-4819-155-2-201107190-00005

Chen, X., Hay, J. L., Waters, E. A., Kiviniemi, M. T., Biddle, C., Schofield, E., Li, Y., & Orom, H. (2021). Health literacy and patient anxiety about illness progression and treatment. Health Education & Behavior, 48(2), 179-187. https://doi.org/10.1177/1090198120958684

Dhananjeyan, P., & Kumar, V. (2023). Health literacy in the United States: Current challenges and future directions. Journal of Health Communication, 28(1), 12-19. https://doi.org/10.1080/10810730.2023.2171825

Nutbeam, D. (2000). Health literacy as a public health goal: A systematic review of the literature. Health Promotion International, 15(3), 259-267. https://doi.org/10.1093/heapro/15.3.259

Rahman, A., Wali, A., De Silva, A. P., Kirkby, K. C., & Lopes, M. C. (2020). Health literacy and medication adherence in chronic disease patients: A meta-analysis. Patient Education and Counseling, 103(10), 1957-1966. https://doi.org/10.1016/j.pec.2020.05.017

Shahid, R., Barber, D., & MacIntosh-Murray, A. (2022). The economic impact of low health literacy in the U.S.: A financial and healthcare burden. Journal of Health Economics, 81, 102553. https://doi.org/10.1016/j.jhealeco.2022.102553

U.S. Census Bureau. (2021, April). Who are our health care workers? Census.gov. https://www.census.gov/library/stories/2021/04/who-are-our-health-care-workers.html