Health Illiteracy – Is It the Culprit?

BY PEGGY A. ROSSI, BSN/MPA – RN/PHN, AND MARY DAYMONT, RN, MSN, CCM, FAAN

Too often, healthcare providers deliver medication reconciliations, discharge instructions, or medication information—whether for prescription or over-the-counter use—using a one-size-fits-all approach. These materials are commonly written or explained in the same way for every patient, without considering that not everyone learns the same way. We do not ask our patients about their best way(s) to learn, and thus, we have no awareness of a patient/family’s ability to understand what is being taught or written. Without this perspective, they are unable to follow directions or take the correct actions, even with printed discharge instructions and after-visit summaries. We must not ignore the patient’s understanding of health information, because if we do, it possibly becomes a contributing factor to adverse effects such as “frequent flyer” visits to the ED, multiple unnecessary readmissions, and repeated 911 calls. If we do, we fear it might. Why? Because the information provided isn’t usable and does not lead to changes in patient behaviors, it often results in worsening symptoms. The possible reason could be that we are not addressing health literacy properly and are not following the rules outlined in the Plain Language Act of 2010 and its revisions in 2024¹ or the directives from the Agency for Healthcare Research and Quality (AHRQ)² to ensure compliance.

According to statistics from the US Department of Health and Human Services and the Office of the Surgeon General, health illiteracy affects approximately 88% of the American population.³ Thus, as changes occur in our healthcare system, which includes our aging population and a multitude of contributing issues, such as quicker discharges and longer waits for linkage to the right level of care, we, as healthcare professionals, must not ignore the role that health literacy plays in all of this. We must also be mindful that illiteracy is not driven by immigration status or cultural or religious norms, or even social determinants of health (SDOH), as many think. Also, with the “silver tsunami” hitting and bringing with it, on average, 10,000 baby boomers daily, many with a vast myriad of chronic illnesses, and other bodily changes, we, regardless of our role in healthcare, MUST take action!

Health literacy encompasses a wide range of factors, including not only the ability to read and write, but also the ability to access, understand, appraise, and use information and services in ways that promote and maintain good health, well-being, and make informed decisions. Equally as important as being able to access websites, read pamphlets, and follow prescribed health-seeking behaviors, health literacy encompasses the ability to think critically about, as well as interact with and express personal and societal needs for promoting health. Individuals with strong health literacy can read prescription instructions, understand consent forms, and follow treatment plans effectively. They also track and manage information in their electronic medical record. Those with limited literacy, however, may misunderstand dosage guidelines, misinterpret labels, or avoid seeking care due to confusion or embarrassment.

Health literacy is influenced by multiple factors, including not only age, gender, or educational attainment but also factors such as income, occupation, poverty, racial or ethnic minority status, language, and reading and writing skills. It exists within and across population groups and settings, and any differences or disparities can fuel it. Any one of which impacts how health literacy then affects a person’s ability to develop and use what was conveyed, as well as whether patients can understand and access the quality, trustworthy information, and services they need.

As healthcare policies, documents, teaching practices, tools, and discharge plans are developed, healthcare providers must consider these disparities and adjust their approaches to better serve the needs of patients and their families. This is especially critical when teaching even the most basic care techniques, as well as when developing detailed discharge instructions or plans. We recall that when the plain language law was first introduced, many attempts were made to follow it. We often found little help, as our tools were frequently complicated and confusing, with the vast majority focused on cultural competency rather than addressing the real culprit: illiteracy. While the intent was to keep teaching and instructions as simple as possible, this often did not happen. You may not be aware, but when the first Important Message (IM) letter was created, it was 14 pages long! Many, after reading it, thought they had lost their Medicare coverage! Believe us, this took hours of many of us working with CMS to clarify, simplify, and condense it to the two pages we now use. Thus, as we develop tools for our patients, we MUST read and re-read them until they are as simple as possible so they convey the message as intended. To help you work on simplifying what you write, you will find an excellent resource available online from the CDC for writing to the point.⁴ Another is the dictionary created by the University of Michigan.⁵

Believe it or not, even people who are well read and are comfortable using numbers can face health literacy issues when:

• A healthcare professional uses unfamiliar medical terms, acronyms, or medical jargon and does not speak or write giving a simple and clear message, nor do they make use of any added teaching techniques or effective translation services, when English is not the primary language.
• The patient/family does not understand, yet they nod their head in agreement even when clear information is not given, medical jargon is used; worse yet, no one has queried them as to how best they learn. Remember – not everyone learns the same way, meaning we may need to modify how we write or speak, and provide instructions as intended.
• The patient/family is hit with a dreaded diagnosis/serious illness and is scared, overwhelmed, and confused. Their emotional state makes it difficult to comprehend or understand information being shared with them.
• The patient/family is under stress, and they are overwhelmed with all the essential health decisions they must make, especially if there is no advance directive on file.
• The patient has a health condition(s) that require complicated self-care, often complicated by poor memory, eyesight, hearing, or dexterity to accomplish a task.
• The patient/family is unfamiliar with how to use technology or devices.
• The healthcare professional assumes the patient/family understands the instructions or doesn’t need instruction due to their higher education background.

Consider the following two scenarios:

1. A single working mother with private insurance was referred to Child Protective Services as her child continued to have seizures due to subtherapeutic anti-seizure medication levels. The emergency department provided repeated education with no impact. At a home visit the mother shared medication instructions to give the medication at 7:00 a.m. and 7:00 p.m., whereas she got up at 9:00 a.m. due to her evening work schedule. She tried getting up at 7:00 a.m. but could not manage it consistently. If she woke up late, she would not give the 7:00 a.m. dose. After discussion, the mother agreed to give the medication at 9:00 a.m. and 9:00 p.m. without skipping doses. The child never returned to the ED and subsequent medication levels were consistently in the therapeutic range.
2. A PhD chemical engineer repeatedly visited the ED and urgent care with asthma exacerbations despite optimized medications and an asthma action plan. At an individualized visit, he was asked to demonstrate his inhaler technique and was observed activating the inhaler then waiting to inhale therefore not getting an adequate dose of the medication. No one had ever taught him how to use the inhaler, assuming he was smart enough to figure it out. After being taught correct inhaler technique, his asthma exacerbations subsided.

So, what is health literacy? The World Health Organization (WHO) defines health literacy as “representing the personal knowledge and competencies that accumulate through daily activities, social interactions, and across generations. Personal knowledge and competencies are mediated by the organizational structures and availability of resources that enable people to access, understand, appraise, and use information and services in ways that promote and maintain good health and well-being for themselves and those around them.”⁶

The Institute of Medicine further defines it as “the degree to which individuals can obtain, process, and understand the basic information and services they need to make appropriate health decisions.” Research indicates that health literacy is a significant predictor of overall health status. Inadequate health literacy can lead to numerous adverse effects on an individual’s health and well-being, including poor self-care, increased utilization of healthcare services, poorer outcomes, and a decreased likelihood of receiving preventive care and services. Poor communication with patients also contributes to unnecessary readmissions, reduced patient satisfaction, and decreased engagement. Health information can be confusing even for those with advanced literacy skills. It’s easy for those of us working in healthcare to forget that we speak our own language, which patients can’t always easily understand. Most of us can recall times when we believed we had shared information with a patient, family member, or caregiver and assumed they understood our instructions, only to discover confusion or a misunderstanding later.⁷

With the passage of the Plain Language Act of 2010⁸ there are a number of tools that can readily be found on the websites of both the federal government education and the plain language government websites.⁹ However, assessing health literacy takes dedicated time in a healthcare environment, increasing pressure to do more in less time. Much of the focus on health literacy has been replaced by social determinants of health. SDOH screening is straightforward and relatively quick and closely linked to health literacy. However, SDOH does not address health literacy in patients with no identified SDOH needs.

In 2005, health literacy was named the “newest vital sign” in the Annals of Family Medicine,¹⁰ which also introduced an assessment tool based on interpreting a nutrition label. This tool, known as the Newest Vital Sign (NVS), involves the healthcare provider showing the patient a nutrition label and verbally asking six questions. While the NVS was found to be reliable, it was not systematically integrated into clinical practice due to time and staffing constraints in healthcare settings.

Another widely used instrument, the Health Literacy Questionnaire (HLQ),¹¹ is a self-administered tool. Like the NVS, it can be time-consuming and is not suitable for all populations. Consequently, subsequent tools were developed with a focus on efficiency. These include the four-question Brief Health Literacy Screening Tool¹² and the Short Assessment of Health Literacy for Spanish Adults (SAHLSA)¹³, both designed for quicker administration in clinical settings.

More recently, the eHealth Literacy Scale (eHEALS)¹⁴ has emerged to address digital health literacy. This tool reflects the growing use of digital platforms for healthcare services, including remote monitoring and direct access to electronic health records, as enabled by the CURES Act.¹⁵

When selecting a health literacy screening tool, several factors should be considered:

• Administration time.
• Administration method appropriate to the setting and population (e.g., paper, online, in person).
• Target population characteristics, including language, age, access to digital resources, and digital literacy.
• Purpose of screening and how the outcomes will be documented and used.

Regardless of formalized screenings or assessments, we should expect health literacy to impact outcomes for our patients and families, irrespective of the setting and SDOH. It is thus critical that, as we work with our patients and families, we continually strive to improve safety and seek ways to expand our efforts beyond the standardization and simplification we focus on in acute care and ambulatory settings. We must consider the other defects that contribute to patient harm, which involve reviewing how we communicate with patients and their families, as well as their treatment plans, and any steps they may need to take to ensure directions are followed as expected. Ensuring that we communicate clearly and deliver information at the appropriate literacy level will be an essential step. While health literacy depends in part on individuals’ skills, it also depends on the complexity of health information and how it is communicated. So, what are some ways to assess a person’s health literacy level, and then what techniques can we use to ensure the message is delivered and received as intended?

Here are some tips we have found useful and in a web search. They are also tips CMS and other nationally recognized authorities approve of to help get the message out and have it understood:

• First, plan and consider what must be covered, and as needed, bring items that may be helpful as you work with the patient or family.
• Plain and straightforward. Ask the patient/family what is their best way to learn something new and then incorporate that into the training plan developed.
• Speak slowly and clearly, using familiar everyday words to keep the message (both verbal and written) as simple as possible.
• Use active verbs, not passive ones – critical for both verbal and written information you wish to share.
• For any task, use the teach-back method and continue with this method until the task is mastered.
• Show them what is needed and possibly use pictures or other visuals, and even perhaps a to-do list.
• Ask open-ended questions and avoid those that require only a yes or no answer.
• Avoid ANY medical or legal jargon, quoting statistics, or laws and regulations.
• Clearly outline actions and steps to ensure they are easy to follow.
• Many online teaching videos can be sent to patients via text or email to reinforce the education provided in the teaching interaction. This is particularly useful for teenagers, parents, and caregivers.

By improving people’s access to understandable and trustworthy health information and their capacity to use it effectively, health literacy is crucial for both empowering individuals to make informed decisions about their health and positively facilitating their engagement in collective health promotion actions, as the determinants of health are addressed. It is even more critical as case managers and the healthcare team work with the patient and family to develop and implement a safe and sustainable discharge plan. The result must serve not only the patients we care for but also our healthcare organization and the goals it wishes to achieve—a win-win for all.

Reference

1. federal plain language guidelines 2024 – Search
2. Health Literacy | Agency for Healthcare Research and Quality
3. Health Literacy Reports And Publications | HHS.gov
4. Guidelines for effective writing | CMS
5. Plain Language Medical Dictionary
6. Health literacy
7. 8 Ways to Improve Health Literacy | Institute for Healthcare Improvement
8. Plain Language
9. federal-plain-language-guidelines.pdf
10. Quick Assessment of Literacy in Primary Care: The Newest Vital Sign | Annals of Family Medicine
11. Brief Health Literacy Screening Tool
12. Assessment Tools for Measuring Health Literacy and Digital Health Literacy in a Hospital Setting: A Scoping Review – PMC
13. Short Assessment of Health Literacy for Spanish Adults (SAHLSA-50)
14. eHEALS: The eHealth Literacy Scale – PMC
15. The 21st Century Cures Act | National Institutes of Health (NIH)

Mary Daymont, RN, MSN, is a seasoned clinical-financial executive nurse leader with over 30 years of experience advancing clinical outcomes while optimizing financial performance across the healthcare continuum. Her leadership has driven the development and implementation of innovative care models in settings ranging from community health and ambulatory clinics to acute care hospitals, rehabilitation facilities, and home health programs. As a Senior Consultant with the Center for Case Management, Mary partners with hospitals, accountable care organizations, and health systems both nationally and internationally to improve care coordination, enhance patient outcomes, and drive operational excellence.

Peggy Rossi, BSN/MPA – RN/PHN, has been a nurse for over 62 years, entering Sacramento State College as one of the first schools in the US to allow a student to graduate with a bachelor of science in nursing degree. To further her education, she graduated from Golden Gate University in 1985 with a master’s in public administration. She was very active in the discharge planning field from the inception of Medicare and Medicaid in 1965, and she has then been active in the field of case management since the early 1980s, when she was hired to be a medical case manager for a major commercial insurer. From these two areas, she found her true career love – serving primarily over the years as director or consultant of discharge planning and case management for health plans, medical groups, and several major tertiary hospitals in the U.S.

After resigning from a major hospital in Sacto, she was immediately hired by the Center for Case Management. In this position she worked as both a consultant and interim director over discharge planning or case management departments of many hospitals across the U.S. Before her retirement in 2021, she was a nurse consultant for one of California’s 21 regional centers, contracted with the CA Department of Developmental Services. During and after the publication of her last text on case management, she continues to contribute to HCPro’s Case Management Monthly, writing articles of key importance to case managers. Her first two nursing texts are Case Management in Healthcare – A Practical Guide (WB Saunders – 1999) and Case Management In Healthcare 2nd Edition (WB Saunders -2003). The text of 2003 won the American Journal of Nursing award for best nursing management text. Her third nursing professional text was written to assist hospitals as they train new staff to the role and is entitled The Hospital Case Management Orientation Manual – (HCPro 2014). Seeing firsthand the void caregivers endure as they are not appropriately prepared for their role, she has now written a book she has dreamed of for years and is engaging in public events as a speaker to help educate caregivers about their rights. This book is available at Barnes and Noble and on Amazon and is in both a hard copy and an e-print. It is titled Caregiver: A Role We Least Expected – Tip and Tidbits to Help in Your Role (Newman Springs Publishing).

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