Health Literacy: Removing Barriers to Understanding

Steve Sparks, Director Wisconsin Health Literacy
Steve Sparks, Director Wisconsin Health Literacy

Imagine yourself an elderly woman just diagnosed with diabetes. Or a new parent whose baby was born with a metabolic disorder. Or a recent immigrant suffering from a serious workplace injury. Then imagine how you would feel when you hear words like A1C, phenylketonuria or laceration.

Being sick or getting injured is bad enough. You don’t need the additional stress of not really understanding what’s wrong or how it can be fixed. The best way to have a great health care experience is to ensure patients leave confidently knowing what they need to do and why.

That is what health literacy is all about. Patients get lots of information—often when they are least able to absorb it. That information may be the bridge or the barrier to better health.

Health literacy is much more than understanding words. It is knowing where to get good information, what that information means and how to use the information to make the best decisions.

Who has low health literacy?

Some population groups are more at risk. But the real answer is “everyone.” Even people usually confident understanding health information can have low health literacy at times. I’m sure you can remember a time when you had trouble understanding health information because you were very sick, under a lot of stress or taking medications that affected your concentration. I always remember the time when my wife was in the emergency room with intense pain. A strong pain pill made her feel much better. The doctor came in and explained what was going on.  But not five minutes after he left, my wife turned to me and asked, “When will the doctor get here?” The pain pill had dropped her health literacy to near zero.

We can’t tell who has low health literacy by looking. And they’re not likely to tell us. That’s why at Wisconsin Health Literacy we advocate the universal precautions approach. Just like using gloves and masks in the clinical setting, universal precautions in health literacy means taking action to minimize risk for everyone. Communicate in a way that everyone understands. Some people think this is dumbing down information and is a disservice to patients. The real disservice to patients is giving them information they can’t understand. Evidence shows even highly literate people prefer simple communications. 

Infographic about health literacy

Whose responsibility is it to improve health literacy?

Everyone: the patient, the provider and the health care system. 

All of us are patients, too. As patients we have responsibility to ask when we don’t understand.  But too often we don’t—whether because of language issues, cultural differences or to avoid feeling shame.  In one study, during an office visit the physician on average said four words patients didn’t understand. When asked why they didn’t ask what the words meant, most patients said, “I didn’t want to feel stupid.” Health care providers must take an active role in making sure their patients understand by learning and using proven techniques, such as plain language and the Teach Back method. Health care systems need to set policies and dedicate resources to support these techniques.

How many are affected by low health literacy?

We know from research that of every 10 adults, nine of them have difficulty understanding health information. Three of them are at the lowest levels of health literacy. They may have trouble completing health forms, communicating symptoms, managing chronic illness or understanding what to do when they leave the hospital or clinic.

These patients are more frequently readmitted to the hospital because they don’t take medications or follow self-care instructions the way they should.

Communication about medications

Medication directions are especially troubling. Wisconsin Heath Literacy is working with pharmacies to make prescription medication labels easier to understand. In a recent survey, 1 in 4 respondents said they had taken a medication wrong because they were confused about the directions. They also shared shocking stories, such as:

  • “The medication was oxycodone 5mg/5ml. The directions were to take 1ml every 4 hours as needed for pain. The mother gave her child 5ml because she thought the strength of the medication was supposed to be the dose she gave her child.”
  • “My grandmother accidentally took 3 times the dose of a medication for about 4 days. The label stated: take 1 1/2 pill twice daily. The instructions meant to take ½ of a pill 2 times a day. The way the instructions were typed on the label led Grandma to believe she should take 1 and ½ pills 2 times a day. She should have taken 1 pill per day, but she was taking 3 pills per day.”

Wisconsin Health Literacy offers workshops on how to use medications and you wouldn’t believe how common it is for one of the participants to say they take all their pills for the day at one time because they can’t remember how many they’re supposed to take when. Misunderstanding about medications often means the patient won’t get the full benefit. But, at worst, the results can be catastrophic.

Why is health literacy important?

People with low health literacy, sadly, are more likely to die earlier. They typically have poorer health knowledge, increased hospital and emergency department visits and higher health care costs. 

Health literacy is not a passing fad. It is a lens through which we view all health care communications. The first step is to become aware of the problem. Then take action.  Start a health literacy team. Arrange for training on health literacy, get a refresher course on how to use the Teach-Back method or make a plan to review written communications for plain language.

Call us if we can help. Health Literacy practices are quick and inexpensive to implement. They dramatically improve the chances that you and those around you can fully understand and take action on critical health information and services. For more information, contact Steve Sparks,, (608) 257-1655 ext. 2, or visit

One Reply to “Health Literacy: Removing Barriers to Understanding”

  1. Thanks ROR WI and Steve Sparks at WI Health Literacy for this comprehensive overview of Health Literacy! It is a bigger issue than most people realize and one that can improve lives and the cost of care.

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