The ABCs of health literacy

Many patients struggle to understand written health materials, as well as their physicians' spoken instructions. Doctors can help their patients get the message.

By Kevin B. O’Reilly — Posted March 19, 2012

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Barry Weiss, MD, still remembers the moment more than three decades ago that sparked his interest in helping physicians communicate more clearly with patients.

“One day, I had a patient in the office and I gave her a handout on something. She turned to me and said, ‘I can’t read.’ Somewhere in my intellect I knew that there were people who couldn’t read, but I was never confronted with someone looking me in the face and telling me they couldn’t. That really set me off on the notion that this might be a pervasive problem,” says Dr. Weiss, author of the American Medical Association’s health literacy manual and professor of family and community medicine at the University of Arizona College of Medicine in Tucson.

His suspicion proved right. Nearly 90% of U.S. adults are less than proficient in reading, understanding and acting on medical information, according to a U.S. Dept. of Education literacy assessment of more than 19,000 Americans that was last done in 2003. One in three patients has “basic” or “below basic” health literacy, meaning he or she struggles with tasks such as completing a health insurance application or understanding a short set of instructions about what liquids to avoid drinking before a medical test.

This literacy gap has medical consequences. A wide body of research has found that patients with poor literacy skills have much worse health outcomes than patients who can read well. They make more medication or treatment errors, are less compliant and are 50% likelier to be hospitalized, says the National Patient Safety Foundation. Low-literacy patients with chronic diseases such as hypertension, diabetes and asthma know less about their conditions and how they should be treated or managed. These patients rack up four times more in annual medical costs than patients with higher reading ability, the foundation says.

And unlike Dr. Weiss’ long-ago patient, 75% of people with limited literacy do not tell their doctors about it, according to a January 1996 study in Patient Education and Counseling. Moreover, health literacy is not just about reading ability. Patients who have trouble reading or comprehending written information often have difficulty following oral explanations and instructions.

Misunderstandings prevail

“Health literacy is about mutual communication,” says Helen Osborne, a health literacy consultant in the Boston area. “It is when patients or anyone on the receiving end of health communication and anyone on the giving end truly understand one another.”

There is often a chasm between the physician’s understanding of treatment and what the patient believes. More than 200 patients at one clinic were asked to tell researchers about their weekly regimen of warfarin, and they got it right only 50% of the time, says an October-November 2006 study in the Journal of Health Communication.

The literacy problem can seem too big for any single doctor, but some interventions have been shown to be effective. For example, a primary care practice using simplified explanations, picture-based materials and the “teach-back” method of ensuring understanding achieved superior outcomes for low-literacy diabetics in a randomized controlled trial, published Oct. 13, 2004, in The Journal of the American Medical Association. Patients who received individualized counseling were nearly five times likelier to meet the goal of glycosylated hemoglobin levels at or below 7%.

“What I tell people about health literacy is that it’s not the hardest thing you’ve ever done, but it’s not the easiest thing either,” Osborne says. “It’s hard to be simple. This needn’t be a whole overhaul of your practice.”

Separate toolkits published by the AMA and the Agency for Healthcare Research and Quality advise that physician practices take these steps to help low-literacy patients:

  • Have people, not machines, schedule appointments. Help patients prepare for visits by having them bring in medications and a list of questions.
  • In the office, use clear and easy-to-follow signage, and encourage patients to ask questions of physicians, nurses and office staff. Help patients complete forms, and use forms that are easy to read, in the patient’s language and only ask for essential information.
  • Use patient-education materials that are written at a sixth-grade level or below, with large type. Also communicate important information orally, with video or pictures.
  • Help patients referred for tests, procedures and consultations by reviewing instructions and providing transportation directions. Give them information about literacy and other nonmedical support programs.

Closing the loop

Health literacy experts say the most important step that physicians can take to ensure they are on the same page with patients is to use the teach-back method, which is also known as “closing the loop.” The idea is to ask patients to repeat back the key points they need to understand before leaving the office, says Howard J. Zeitz, MD, an allergist and immunologist in Rockford, Ill.

“The way I do it is to ask, ‘When you get home tonight, your husband or wife will probably want to know what happened. What are you going to tell him or her about what you and I agreed to in the office today?’ ” Dr. Zeitz says.

“If they can’t tell me what it is they need to do in the format of talking to their spouse, that means they’re not in command of the material, and I haven’t gotten them to successfully understand it. If I see they’re not in command, then I take another crack at it.”

This is where things get tricky, experts acknowledge. Combine the complexity of the information being presented, physicians’ overreliance on medical jargon and patients’ limited health literacy, and the time it takes to close the loop can quickly bump the day’s schedule off track.

“Everyone worries about this being a time sink,” says Mary Ann Abrams, MD, MPH, the health literacy medical adviser at the Iowa Health System, based in Des Moines.

For example, reviewing medications with patients is one of the most important uses of teach-back. A study presented at the 3rd Annual Health Literacy Research Conference in October 2011 found that, for 144 patients averaging 6.5 prescriptions, it took 2.6 teach-back tries for the patients to correctly explain how and when to take their medications.

That is why AHRQ and others recommend that physicians gradually incorporate teach-back, starting with the last patient before lunch or the last patient of the day. But the method takes less time with practice. Instead of doing teach-back only at the end of the visit, physicians experienced with the technique will do it throughout the visit to check understanding and write or print out easy-to-read notes to help patients remember key points. Closing the loop also forces physicians to devise simpler ways to get their messages across.

“The thing about doing the teach-back is that it changes how we communicate the information that first time around,” says Darren A. DeWalt, MD, MPH, who co-wrote the AHRQ toolkit. “If you’re really holding yourself — and patients — accountable for understanding, then you’ll explain it better. It’s not just another utterance.”

Another tool physician practices should consider using is the so-called brown-bag medication review, in which patients are asked to bring all their medications to an office visit. A physician, nurse or other health professional checks to see if there are any discrepancies with the medications listed in the patient’s chart. Then patients are asked to explain how and why they are taking each medication.

“It was really eye-opening, as we began ... to see how frequently there had been a miscommunication, which, if you’re not using it, you don’t even know,” says Gordon Zubrod, MD, assistant residency program director at the Thomas Hart Family Practice Center in York, Pa.

The clinic collaborated with several other practices in the area, working to implement health literacy interventions. Another participating physician reported doing a medication review with a patient who had eustachian tube dysfunction with a serious otitis media. He was prescribed a nasal spray to help clear it.

“It’s not working,” the patient told his physician. When asked to demonstrate how he was using the medication, he sprayed it into his ear.

“That part — where to spray it — had never been communicated,” Dr. Zubrod says.

Speaking a patient’s language

Though it can be hard for physicians already in practice to change how they communicate, the literacy gap between doctors and patients starts as early as medical school, says Paul D. Smith, MD, a professor of family medicine at the University of Wisconsin School of Medicine and Public Health.

“This is what happens when you take a normal person and bring them into medical school,” Dr. Smith says. “The first thing we do is teach them all these new words. They pretty quickly forget that the rest of the world doesn’t know this language. You almost need two languages, one that you use with your colleagues and a second vocabulary you use with your patients.”

Physicians should explain concepts to patients the way they would to an elderly relative, many experts say. Leave out esoteric biomedical details. Instead of telling a patient to see her cardiologist, refer her to the heart doctor.

Many medical schools now include some health literacy content in lectures, though the Assn. of American Medical Colleges could not provide specific data because health literacy content usually is taught as part of broader subject areas such as health disparities or physician-patient communication.

More research on the effectiveness of various health literacy interventions is on the way. The American Academy of Family Physicians’ National Research Network is recruiting 12 practices nationwide to participate in a study to test the ideas in the AHRQ toolkit.

Ensuring that patients understand their conditions and how to manage them can be frustrating for physicians eager to move on to the next patient. But doing that is essential, Dr. Abrams argues.

“At the end of the day,” she says, “none of the other stuff we do matters if the patient doesn’t know what they need to do when they leave the office.”

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How common is low health literacy?

More than one-third of U.S. adults have trouble reading and understanding basic medical information, according to a literacy assessment of 19,000 patients. These are the definitions of the four health literacy levels based on what task the patient can perform.

14% Below basic level - Can circle date of upcoming medical appointment

22% Basic level - Can read clearly written pamphlet and explain value of screening test

53% Intermediate level - Can read over-the-counter medication label, identify drug interactions

12% Proficient level - Can define medical term after reading complex document

Source: “The Health Literacy of America’s Adults: Results From the 2003 National Assessment of Adult Literacy,” U.S. Dept. of Education, National Center for Education Statistics, September 2006 (link)

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6 signs of limited health literacy

Because poor health literacy is so prevalent, experts say physicians should avoid trying to guess which patients need extra help. However, patients who are elderly, high school dropouts, unemployed, black, Hispanic or recent immigrants are likelier to have trouble understanding medical information. Doctors should look for these red flags:

Patients with low health literacy may:

  • Fill in registration forms incompletely or inaccurately.
  • Frequently miss appointments.
  • Fail to follow through with laboratory tests, imaging tests or referrals to consultants.
  • Say they are taking their medication, even though lab tests or physiological parameters do not change in the expected fashion.
  • Say: “I forgot my glasses. I’ll read this when I get home”; “I forgot my glasses. Can you read this to me?”; or “Let me take this home so I can discuss it with my children.”
  • Be unable to name their medications, explain what they are for or tell when they are supposed to take them.

Source: “Health literacy and patient safety: Help patients understand; Manual for clinicians, Second edition,” American Medical Association Foundation, 2007 (link)

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External links

“The Health Literacy of America’s Adults: Results From the 2003 National Assessment of Adult Literacy,” U.S. Dept. of Education, National Center for Education Statistics, September 2006 (link)

“Health literacy and patient safety: Help patients understand: Manual for clinicians, Second edition,” American Medical Association Foundation, 2007 (link)

“Problematic Words in Health Research,” Health Literacy Out Loud Podcast (link)

“Language, literacy, and communication regarding medication in an anticoagulation clinic: A comparison of verbal vs. visual assessment,” Journal of Health Communication, October-November 2006 (link)

“Influence of Patient Literacy on the Effectiveness of a Primary Care-Based Diabetes Disease Management Program,” The Journal of the American Medical Association, Oct. 13, 2004 (link)

“Health Literacy Kit,” American Medical Association, 2007 (link)

“Health Literacy Universal Precautions Toolkit,” Agency for Healthcare Research and Quality, April 2010 (link)

American Academy of Family Physicians’ National Research Network study of the “Health Literacy Universal Precautions Toolkit,” currently in design and development phase (link)

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