Patients’ low health literacy is a significant threat’ to quality care
Problem has only begun to be addressed
Although some estimates indicate that it adds as much as $73 billion in annual health care expenditures in the United States, low health literacy has received surprisingly little attention from the health care community. In recent years, the momentum appears to have shifted a bit, but health literacy experts are not at all satisfied with the progress made to date.
"Health literacy is the inability to read, understand, or act on health information," explains Herman I. Abromowitz, MD, president of the American Medical Association’s AMA Foundation in Chicago. "We think recognition of the problem could be a lot higher."
While no formal study has been conducted to measure health literacy, the 1992 National Adult Literacy Survey reported that as many as 44 million of the adult population of 191 million were functionally illiterate. A full 48% could not read or understand a bus schedule, and 21% could not read the front page of a newspaper. That’s why the foundation has made health literacy its "signature" program. "I see a direct correlation between understanding health care information and maintaining good health," notes Abromowitz. "It should be of foremost concern in how to properly treat patients." (For a fact sheet summary on the impact of low health literacy, "Health literacy facts," in this issue.)
"Low health literacy is a newly recognized problem," adds Ruth Parker, MD, associate professor of medicine at the Emory School of Medicine in Atlanta. "There’s been broader attention to the subject in the last five years. "There certainly are a lot problems; the issue is very underrecognized by most health care practitioners," she continues. "There are many patients who struggle with health literacy problems — perhaps [more than] one-third of them. Many of them don’t realize their own struggles, or they are embarrassed by them. It’s hard to admit you don’t know something; nobody wants to look dumb."
Parker first became interested in the topic 10 years ago during a clinical study, when one of the findings was that the patients were not able to read the survey instrument. "When we looked at the literature, most of what we saw focused solely on reading levels," she recalls. "Our concern is what we call functional health literacy — not just pronunciation, but reading and understanding concepts, and applying those concepts to impact your health. So we began by finding ways to measure patients’ ability to understand and to follow up on medical instructions."
"The ability of a patient and provider to work together to ensure that the patient has a very concrete understanding of his or her health status, or disease if they have one, is absolutely critical to assuring that the patient will play a lead role in improving his or her health status," notes Barbara DeBuono, MD, MPH, medical director of public health for Pfizer Inc. in New York City.
"It’s one thing to write a prescription and give it to a patient. It’s quite another to explain that prescription: Here’s what I’m writing it for, and why;’ what the medication feels like; how to take it. We can assure the quality of care delivered and care received is improved and enhanced by caregivers and patients contributing to an effective communication interchange. The patient asks good questions, and the physician is sensitive to the patient’s specific needs. Health literacy is a piece of that — the ability to read brochures or even the prescription the physician gives," she says.
A patient with low health literacy presents a significant challenge to quality care because, by definition, he or she is "a setup for misinformation, miscommunication, and mistakes, all of which have a whole lot to do with quality," Parker notes. In the case of a mammography screening, if the patient is not able to understand a commonly used pamphlet that explains how often and at what age she should have a mammogram and if there is no backup in place for printed material, she will not have adequate health knowledge to be able to respond appropriately to this health prevention measure.
Miscommunication is another serious threat to quality. "Patients who present for clinical care [and] have poor health literacy often have to rely on their memory of conversations with health care providers," Parker explains. "The information provided in a short clinical setting isn’t always accurately given or remembered. And the backup material may be printed material they can’t understand."
Mistakes also can be common. "Many patients describe to us not taking their meds correctly because they couldn’t understand label instructions on how to dose themselves," she observes.
Tackling the problem
Where should a quality manager begin tackling the health literacy problem? "The first step is recognizing how big a problem it is," says Parker. "Look very specifically at your own system at the provider/patient level. Begin to figure out what your hot spots are, then start brainstorming for solutions."
Who should be involved? "Whoever’s in charge of the process or involved in care," she advises. "That includes doctors, pharmacists, and all levels of care. It begins with access: What does it take to get into the system? How is it navigated? Is there a phone tree? Paperwork to fill out? Forms that let you know what you’re eligible for? One-on-one encounters? If patients are struggling, did they bring someone with them who can help?"
"You should start by educating providers to be sensitive to this issue — to the fact that many of their patients struggle with literacy, or beyond that, have real difficulty understanding the messages that are communicated to them," says DeBuono. "Step back and think, Is this patient really getting it?’ It takes a few extra minutes, but it’s absolutely critical. And that time is made up for later on by not having to re-explain things or treat the patient again because lack of compliance led to other problems."
Abromowitz uses the "teach-back" method: "I ask the patient to give my instructions back to me. And I use simpler language — as simple terms as I possibly can." Abromowitz says he also makes the patient communicate more by encouraging him or her to ask questions. "Physicians must assume that as part of their responsibility." (The AMA Foundation recommends a combination of verbal and written communications. See "AMA Foundation offers health literacy guidelines," in this issue.)
DeBuono agrees. "It’s not just the patient’s burden," she insists. "It’s the responsibility of the providers as well to ensure that when a patient leaves, [he or she] understands what to do. In most cases, this can be done even if literacy levels are low. In fact, it can be done in recognition of the fact that a patient has literacy challenges. I tell you how to take the pills; now you tell me back. I show you a video, then we discuss it. And in the bargain, you’ve just improved the patient’s health literacy!"
If providers are sensitive, she adds, they may refer the patient to an adult literacy program. "I think that’s also a responsibility of providers," says DeBuono.
Tools now are available to help quality managers combat low health literacy. For example, there are instruments that can be used to measure levels of health literacy; one was described in an AMA ad hoc committee report in the Feb. 10, 1999 Journal of the American Medical Association (JAMA).
In addition, the AMA, supported by funding from Pfizer Inc., which has its headquarters in New York City, has created a health literacy introductory kit for physicians and other providers. It includes:
- a video presenting a series of vignettes of individuals affected by low health literacy;
- a copy of the AMA’s JAMA report;
- fact sheets on health literacy;
- a discussion guide with a physician feedback survey;
- a questionnaire for continuing medical education credit (2 hours).
The toolkit is designed to help providers learn about the scope of the health literacy problem, recognize health system barriers faced by low literacy patients, improve methods of verbal and written communication, and incorporate possible strategies to create a shame-free environment.
"We clearly want to remove the shame," says Abromowitz. "You can be a very educated person but not understand medical terms, in much the same way that I possibly could not understand a rocket scientist."
More help is on the way. In addition to supporting the AMA toolkit, Pfizer has supported a number of other projects, including the development and evaluation of new interventions and tools. Pfizer also sponsors a major conference on health literacy every June. (For a summary of a recent health literacy conference sponsored by the AMA, see "AMA Foundation holds literacy symposium," in this issue.)
"We are supporting research to be conducted in seven projects all around the country, looking at the impact of certain key-targeted health literacy interventions in health settings," DeBuono explains. "They involve a wide range of issues, such as using multimedia tools targeted to low-income women around 40 about mammography to enhance their understanding of its importance. We will then measure mammography rates. In short, we want to see what works and what doesn’t."
Interventions needn’t be costly or complex to be effective, she claims. "It doesn’t necessarily take a fancy computer system with algorithms — just downright verbal and written communication between the system and the patient," she says. "But providers must realize it’s often a combination of doctors, nurses, receptionists, and pharmacists. It’s really a team that’s communicating with your patients."
And it’s not just a matter of improving the ability of your patients to read health information. "It’s improving the ability of patients to understand and act upon that information," DeBuono explains. "To gain a better understanding, they have to have a combination of opportunities — experiencing written materials as well as verbal messages," she says. "It may also include visuals, like looking at videos about specific diseases. Communication must occur in a multidimensional, multifaceted way."
In short, she concludes, the health literacy movement is not only about getting patients to read, "but to re-engineer the visit to enhance the patient’s understanding of diet, exercise, medications — all of which will go a long way toward improving quality of care."
"There’s a lot of work to do," adds Parker. "The problem is not insurmountable, but we are in critical need of more funding, more education, and more attention."
References
1. Kirsch IS, Jungebut AJ, Kolstad AL. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Washington, DC: Department of Education; 1993.
2. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs of the American Medical Association. Health literacy: Report of the Council on Scientific Affairs. JAMA 1999; 281:552-557.
Need More Information?
For more on health literacy, contact:
• Ruth Parker, MD, Associate Professor of Medicine, Emory School of Medicine, Department of Medicine, 69 Butler St. Atlanta, GA 30303. Telephone: (404) 616-7490. E-mail: [email protected].
• Barbara DeBuono, MD, MPH, Medical Director, Public Health, Pfizer Inc., 235 E. 42nd St., 235/11/6, New York, NY 10017. Telephone: (212) 733-5185. E-mail: [email protected].
• Herman I. Abromowitz, MD, AMA Foundation, 515 N. State St., Chicago, IL 60610. Telephone: (312) 464-5357.
Other resources:
• The National Academy on an Aging Society, Washington, DC. Telephone: (202) 408-3375.
• The Center for Health Care Strategies Inc., 353 Nassau St., Princeton, NJ 08540. Tele-phone: (609) 279-0700. Fax: (609) 279-0956. E-mail: [email protected].
• The National Library of Medicine’s web site contains 479 citations. www.nlm.nih.gov/pubs/cbm/hliteracy.html.
• The Healthy Literacy Network is a community of researchers, practitioners and advocates. Its web site includes articles on health literacy, a discussion forum, and listings of researchers, practitioners, and advocates. www.healthliteracy.net.
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