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Dec 2018

The True Cost of Health Illiteracy to Providers and Patients

I once read that a diabetic patient was taught to inject insulin by practicing on an orange. Shortly after leaving the hospital, he was back with high blood sugar levels.  

It turns out that when he got home, he continued to inject the insulin into an orange and then ate the orange pieces. Why did this happen? The man simply did not understand what he was supposed to do. He was not health literate.

Health literacy is usually defined as “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.” This capacity is not necessarily related to how many years of education a person has or their reading and speaking abilities. Someone may be a brilliant author or orator or be great at math and still have marginal or no literacy when it comes to healthcare. 

And almost 90 percent of U.S. adults have some degree of health illiteracy. In addition to the personal costs of health illiteracy, there is also an economic cost. Studies indicate that those individuals with lower levels of health literacy pay, on average, over $2,000 a year more for medications and more than $500 for doctor’s office visits than those with above-average health literacy. Inpatient spending increases by approximately $993 for patients with limited health literacy. Combined, health illiteracy is believed to cost the U.S. healthcare system between $106 billion and $238 billion each year.  

Patients with some degree of health illiteracy usually have problems with:

  • Effectively using health information (such as medical pamphlets or guidelines) to determine how often to get preventative screenings. Not understanding these may impact whether they get preventative tests, such as mammograms or colonoscopies, as often as they should.
  • Understanding how to take medications correctly. Only 50 percent of people with marginal health care literacy consistently take medications as directed. And not taking medications properly may cause a drug interaction. Reportedly, each year adverse drug events account for nearly 700,000 emergency department visits and 100,000 hospitalizations.
  • Knowing how to follow through with instructions from a healthcare provider about how to manage a chronic disease. Usually, health illiterate patients are embarrassed about not understanding instructions and do not ask questions or seek clarification.
  • Reading and acting appropriately with consent forms, appointment confirmations and hospital discharge instructions.
  • Calculating or using tools to measure conditions such as hypertension, blood sugar levels, medication dosage and even comparing healthcare plans to decide which is best for their needs.

Being health illiterate also makes it much harder for patients to find the information and services they need to get and stay healthy. It impacts their ability to effectively communicate symptoms and make the most appropriate healthcare decisions for themselves and their dependents. This is especially perilous for population health given that those groups most impacted by health illiteracy, such as older adults, low-income individuals and those with chronic diseases, are the ones who need most to be able to effectively communicate with healthcare providers and understand what they are being told. Other groups more likely to experience low health literacy include racial and ethnic minorities, non-native speakers of English and individuals who have not completed high school.  

Even if a healthcare consumer is usually health literate, he or she may demonstrate instances of health illiteracy if they are:

  • Not really familiar with how their bodies work and the terms used to describe bodily systems and functions.
  • Faced with a health condition that requires ongoing, and perhaps complicated, self-care, such as could happen with cancer aftercare, heart surgery or diabetes.
  • In a position to need to evaluate multiple options and opinions, such as agreeing to a surgery, selecting end-of-life treatment options or choosing one medication over another.
  • At a point where they have to decide how to vote on issues, such as a hospital bond or bans on certain foods, that could impact their family and community.
The Impact on Providers and Their Communities

Having an adequate level of health literacy is important since literally everyone, at some point, will be faced with a situation where they will need to find, understand and use health information and services. From a community health perspective, there is credible evidence that a person with a low level of health literacy is:

  • Less likely to take advantage of preventative care such as flu shots.
  • More likely tohave a longer hospital stay of an extra day or more after major abdominal surgery.
  • More likely to use the emergency room rather than other types of outpatient care.
  • Not receive cancer treatments that best meet their needs and that could impact outcome.
  • More likely to have trouble managing chronic diseases such diabetes, asthma, HIV/AIDS and hypertension.
  • More likely to have a lower life expectancy after a heart attack.
What Providers Can – and Should – Do

While health illiteracy used to be seen as a “patient problem,” industry organizations now recognize that the healthcare industry – including public and private providers, healthcare practitioners, and payors – all have important roles to play in addressing the challenges of health illiteracy. These include:

  • Determining Patient Health Literacy Levels: A key element of helping individual patients better understand written and oral healthcare communications is to determine their level of health literacy at the outset so that communications can be better delivered in a way they will understand. There are various tools available, for example the Brief Health Literacy Screen (BHLS), the Test of Functional Health Literacy in Adults (S-TOFHLA) and the Rapid Estimate of Adult Literacy in Medicine-Revised (REALM-R), to determine a patient’s level of health literacy.
  • Using Plain Language: Healthcare professionals have a tendency to speak among themselves in “healthspeak.” This can be intimidating and unintelligible to patients.  The best solution is for providers and their staff to use language that patients – and their families and caregivers – can understand from the outset. It is also important for providers to consider patient health literacy levels since what may be understandable to one person may not be to another. Plain language applies to verbal communications as well as written. For example, substitute words like “swallow” for  “take,” or say, “high cholesterol” instead of “hyperlipidemia.”
  • Being Culturally Sensitive: Another element of health literacy, which may be easy to overlook, has to do with how a patient’s cultural background may impact how he or she interacts with a healthcare provider and with the healthcare system in general. The combination of an individual’s beliefs, values, experiences and community health practices need to be considered when communicating with them. For example, while some “old wives’ tales” may have some medical validity, the majority of them do not.  Overcoming these beliefs is important in ensuring patient understanding and compliance.
  • Confirming Patient Understanding: Just because a patient may say they understand written or oral healthcare communications does not necessarily mean that they understand and comprehend the information. For this reason, it is imperative for a provider to confirm this understanding. One easy way to do this without offending the patient while making it easy for them share any doubts is to ask them to repeat what they just heard or read. This same approach can be used when a provider shows a patient how to do something, for example change a wound dressing, by asking the patient to do it themselves.
  • Encouraging Patient Interaction: Given the time demands on most provider-patient interactions, many patients may feel rushed or uncomfortable asking “too many” questions. For this reason, it is important for providers to foster an environment where a patient feels not only safe but also encouraged to ask questions.

It may be tempting to minimize the importance of health literacy to provider operations and patient treatment outcomes. However, it is clear that patients who clearly understand what is being communicated to them are better versed at navigating the healthcare system. These patients make more informed decisions about their healthcare, and this creates a win-win for everyone.  


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