Poor Patient Health Literacy and Its Impacts

Understanding the complexities of health information and traversing the often obtuse, poorly organized, broader healthcare system can be difficult for even the most knowledgeable and educated individuals. For anyone who lacks this background, it can be an even more profound challenge.

Dr. Kripalani

Sunil Kripalani, MD, MSc, MHM, FACP, a hospitalist and a professor of medicine and health policy at Vanderbilt University Medical Center in Nashville, Tenn., pointed out, “The healthcare environment is very complicated and difficult to navigate. From insurance to  medications—everything about our healthcare system is at a 10 out of 10 level of complexity.”

For the past 20 years, Dr. Kripalani has been working with his healthcare system to reduce this complexity, where possible, to provide more patient-centered care. Such system-level work is key to addressing low health literacy. Although health literacy was originally thought of primarily in terms of patients’ abilities and limitations, an equally critical component is “organizational health literacy”—how well health systems implement strategies that make it easier for patients to successfully understand and play an active role in their treatment and health maintenance.

Dr. Press

Valerie Press, MD, FAAP, FACP, MPH, SFHM, is a hospitalist researcher and a professor of medicine and pediatrics at the University of Chicago in Chicago. She underscores that the specific interactions patients have with clinicians and the broader healthcare system can enable or inhibit patients’ underlying healthcare literacy. “If we use a lot of jargon in a patient’s discharge instructions, and they don’t do what we said, we might say they had low health literacy. But we might have just not done a good job on our end of providing helpful instructions.”

Dr Roomiany

“We’re focused a lot on patient and hospital metrics in hospital medicine, but healthcare literacy is sometimes overlooked, which is unfortunate, as it is probably one of the main contributors to those metrics,” said Pahresah Roomiany, MD, MS, FACP, a hospitalist at DukeHealth, and an assistant professor of medicine at Duke University School of Medicine, both in Durham, N.C. “For instance, if  people don’t understand why they’re taking their heart failure therapies and what their heart is doing, they’re less empowered and less likely to be invested in their healthcare.”

Causes of Poor Health Literacy

Extending beyond the ability to comprehend written information on medical topics, health literacy can be broadly defined in terms of an individual’s ability to obtain, understand, evaluate, and use information related to health, information that can help them act in ways that impact their overall well-being.

Dr. Press notes that a patient’s health literacy can be fluid, that a patient may have different abilities to understand and engage with health information in different contexts. For example, some hospitalized patients and family members may have relatively lower capacities to actively take in new information and act on it, just due to the overwhelming and stressful nature of the situation, compared to their capacities at an outpatient clinic visit.

“Still,” said Dr. Press, “it’s a good opportunity to plant seeds and do some of the education and see how far you can get.”

Research has demonstrated that medical providers tend to overestimate patients’ true levels of health literacy, which can be defined and measured in different ways. By one estimate, 36% of adults have very limited health literacy skills, while only 12% of adults are considered truly proficient. This leaves a large majority in the middle, with fluctuating levels that vary based on specific context.¹

Relatedly, one study showed that only 8% of Americans are proficient in the math skills relevant to healthcare decision making.¹ In the modern environment, the challenges of e-health literacy add another layer of complexity. The causes of widespread low health literacy are multifaceted. In addition to the sheer complexity of the information and environment, the overall educational system in the U.S. fails to provide basic universal education on health concepts, and many people do not pursue additional training on these topics.

Low educational attainment is a risk factor for low health literacy, as are other social determinants of health, such as low income, minority status, community environment, and lack of English proficiency. Thus, low patient literacy may particularly be a factor to consider in hospital settings that serve many patients with such risk factors. In fact, poor health literacy seems to be a major  contributing factor and mediator of health disparities associated with income, race, etc.¹

However, some patients with these risk factors have high health literacy skills, and vice versa. Health literacy doesn’t necessarily correlate with a person’s level of intelligence or education and thus must be considered in all patient settings.

Dr. Juthani

Another element is the proliferation of internet medical content that is incomplete, misleading, or simply incorrect. Prerak Vipul Juthani, MD, MBA, a new hospitalist and a clinical assistant professor of medicine at Stanford Health Care in California, says some patients, driven by prior internet searches, are progressively funneled by algorithms into widening cycles of misinformation. Thus, providers must contend with both patients who simply lack understanding about their medical conditions and patients who have strongly held but misleading beliefs.

Impacts of Poor Health Literacy

Although certain groups are at higher risk for low health literacy, studies have shown that it is an independent risk factor for poorer overall health and worse patient outcomes on multiple measures. Inadequate health literacy may be a stronger predictor of poor health than age, income, employment status, education level, or race.² One study found that compared to those with high health literacy, intermediate levels of health literacy were associated with a 24% increased risk of mortality, and low literacy was associated with a 75% increased risk.³

“We have some patients who don’t take care of their existing health issues, then just get worse,” said Dr. Roomiany. “They know they’re supposed to take a lot of different pills, but they don’t know why. Maybe if they had been taught more and understood more, maybe some of that could have been prevented.”

Limited health literacy is associated with decreased patient safety, higher healthcare costs, and increased healthcare utilization, including increased emergency department visits and hospitalizations.¹ Poor health literacy is also associated with increased hospital length of stay and more readmissions post-discharge.^4,5

Dr. Kripalani noted, “Awareness of health literacy issues is an integral component of providing patient-centered care. It’s very challenging for patients to be active participants in decision making if the information that we provide is overly complex or rushed.”

Dr. Kripalani makes health literacy part of teaching rounds with his hospitalist team, like discussing whether a patient’s difficulty understanding and following their treatment plan contributed to the hospitalization. “As we prepare patients for hospital discharge, we explicitly talk as a team about how we’re going to coach patients on any new instructions.”

Best Practices: Employing Universal Precautions

The “universal precautions” approach encourages clinicians to assume that all patients are at risk of low health literacy—that all, at times, may have difficulty taking in information. Accordingly, you should always use communication best practices. This helps ensure that all patients receive clear communication and get the best chance of true participation in shared decision making.

As a key part of the universal precautions approach, all four hospitalists employ the teachback method, asking patients to describe the information they have been given in their own words. If the patient responds inaccurately or repeats the provider’s exact language without demonstrating understanding, the clinician explains in a different way, again assessing for understanding. A variant of this, the “showback” method, is appropriate for contexts like demonstrating the use of a piece of medical equipment.¹

Dr. Roomiany added, “The processes you’re explaining can be simplified. Patients might not have a medical degree, but they can still learn to understand medical concepts very well. One of our biggest jobs as physicians is to distill information for them.”

Another important element is focusing on what to discuss and not overwhelming patients with too much information, noted Dr. Press. “It’s best to have no more than two or three take-home points when you’re doing teach-backs,” she said, “though you might need to touch on additional topics.”

Dr. Kripalani also emphasizes the importance of using plain, simple language, avoiding medical jargon where possible, and explaining any necessary terminology.

Dr. Press recommends saying, “What are your questions?” instead of asking patients if they have any questions. “It’s a small language tweak, but it implies that I think they’ll have questions, giving them permission to take a second and think.”

Dr. Roomiany noted that not all patients share the same learning style, and sometimes that requires trying different teaching approaches. And because patients come in with different backgrounds, she starts with a universal precautions approach, but then might move to more technical language for select patients who want that level of detail.

Assessing Health Literacy

Sometimes it becomes obvious during an interaction that a patient may not be fully understanding their illness and treatment. But whether clinicians and/or institutions should proactively and systematically screen for health care literacy remains an open question. A variety of multi-item tests evaluating health literacy have been developed, such as the Short Test of Functional Health Literacy in adults, the S-TOFHLA. However, Dr. Press points out that these are primarily used for research and are impractical on the wards. In contrast, very short tools such as the Brief Health Literacy Screen can more easily be employed as part of the overall history.

Some might argue that screening might be unnecessary, given that clinicians should be using “universal precautions” for communication with all patients. However, healthcare professionals who are made aware that their patient may have relatively low health literacy may be more thoughtful about employing such best practice strategies or using other techniques to improve communication.

Dr. Kripalani is a strong proponent of health literacy screening at a systems level, which can then influence how services are allocated.  Over a decade ago, his hospital became the first in the country to initiate brief health literacy screenings performed by a nurse as part of patients’ initial assessments.

“There are certain resource-intensive interventions that we can deliver as hospitals—like additional medication counseling by a pharmacist—which are difficult to provide for everyone,” said Dr. Kripalani. “But if we identify the patients who have low health literacy and direct this type of additional assistance to them, then they have a greater chance of benefiting from it.”

For example, at his institution, patients screened as having low health literacy receive extra follow-up from the discharge care center, with extra education, help with navigation on their follow-up plan, etc.

Research supports this strategy. Dr. Kripalani and colleagues performed a study of patients hospitalized for acute cardiovascular conditions, studying 30-day readmission rates. They provided pharmacist counseling, adherence aids, and telephone follow-up post-discharge. These efforts did not make a difference in the overall readmission rate; however, the intervention proved quite effective for individuals within the study who had low health literacy.⁶

Supplemental Tools and Resources

Dr. Press noted that addressing the needs of a patient with low health literacy isn’t a one-size-fits-all approach. “Sometimes you can give them a video or module; sometimes it’s bringing in family to help with understanding; sometimes it’s just giving them more of my time than I can spend with most patients.” In some cases, it might mean connecting with other people in the healthcare team who can help with patient education and resourcing, like diabetes educators.

Depending on the context, some supplemental tools and resources are appropriate for all patients. For example, a quick diagram with the patient at the bedside can help with patient education while sustaining overall attention.

Where possible, it’s ideal to use techniques of showing and not just telling. For example, Dr. Roomiany is engaged in a research project that involves showing heart failure patients their bedside ultrasound while engaging in patient education. “It’s visual and concrete, so it makes a real impression, and they respond more to what we’re doing.”

High-quality supplementary written materials can also be very helpful for some patients, e.g., at discharge. However, not all patients read well or at all, and many may be unlikely to wade through all that information. Dr. Roomiany noted that when supplying written information, it’s key to go through the main points with the patients.

Dr. Juthani shared that many patients respond better to other informational tools, such as links to online reputable videos, like those produced by Stanford. He also noted that, based on patients’ ages and the information environment in which they grew up, some may be more receptive to different types of medical education and more influenced by different types of media environments.

Navigating Health Misinformation

Another important aspect of health literacy, especially in the modern environment, is health misinformation. Some patients have very strong beliefs about health and medicine that aren’t grounded in the current medical scientific consensus.

Dr. Juthani noted that it’s important to take a curious, non-judgmental approach with such patients. Often, he notes, it takes time to understand someone’s misinformed health beliefs, which are usually grounded in some sort of personal experience. He said, “To me, health literacy is not necessarily about teaching someone they’re wrong; it’s more about finding the source of those beliefs and finding ways to meet patients where they are.”

Dr. Juthani produces his own medical video content that he shares online and through social media. He encourages other hospitalists to be proactive about combating the misinformation environment by creating and spreading such quality content, given how many patients get their medical information via the internet.

Institutional Organization

Institutions can invest in putting patients’ educational needs more at the forefront of care. Dr. Kripalani shared that at his institution, a strong department of patient education has helped instill and enforce high standards for patient communication throughout the health system, e.g., ensuring high-quality patient education materials and training staff in communication skills.

Outright language barriers are a direct but sometimes overlooked element of health literacy, as some patients do not have enough English proficiency to truly engage with their doctor in shared decision making. Dr. Juthani noted that Stanford has recently tried to make high-quality translation services a top priority, e.g., trying to ensure in-person translation services wherever possible.

Medical institutions can do a lot to make the system more intelligible and accessible for patients, said Dr. Press, including simple things such as using non-technical language on medical signs. As part of that, she argues that non-technology options should still always be available to patients who are not able to negotiate e-health services such as patient portals. While such elements may help improve patient literacy and enhance patient communication in some instances, the way in which they are implemented matters a lot.

While broad institutional priorities can make a big difference, hospitalists should also not underestimate the impact they can have with patients one-on-one.

“Most individuals would benefit from better attention from clinicians in the health system on health literacy—most would benefit from better communication on our end,” said Dr. Press. “We owe it to our patients to do everything we can to help them understand and identify if they need additional resources.”

Ruth Jessen Hickman, MD, is a graduate of the Indiana University School of Medicine in Bloomington, Ind., and a freelance medical writer.

For more on health literacy, read Recognizing and Addressing Health Literacy Barriers.

References

1. Glick AF, et al. Health literacy in the inpatient setting: implications for patient care and patient safety. Pediatr Clin North Am. 2019;66(4):805-826. doi:10.1016/j.pcl.2019.03.007.

2. Shahid R, et al. Impact of low health literacy on patients’ health outcomes: a multicenter cohort study. BMC Health Serv Res. 2022;22(1):1148. doi:10.1186/s12913-022-08527-9.

3. Vaillancourt R, Cameron JD. Health literacy for children and families. Br J Clin Pharmacol. 2022;88(10):4328-4336. doi:10.1111/bcp.14948.

4. Mixon AS, et al. Association of social determinants of health with hospital readmission and mortality: a prospective cohort study. Health Lit Res Pract. 2024;8(4):e212-e223. doi:10.3928/24748307-20240702-01.

5. Jaffee EG, et al. Health literacy and hospital length of stay: An inpatient cohort study. J Hosp Med. 2017;12(12):969-973. doi:10.12788/jhm.2848.

6. Bell SP, et al. Effect of pharmacist counseling intervention on health care utilization following hospital discharge: a randomized control trial. J Gen Intern Med. 2016;31(5):470-7. doi:10.1007/s11606-016-3596-3.