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Issue of the Month: Health Literacy--A Quality and Patient Safety Imperative

By Vida Foubister

We've all seen a prescription bottle label that reads: "Medication should be taken with plenty of water." As part of an American College of Physicians (ACP) Foundation health literacy initiative, Jean A. Krause, executive vice president and CEO, wants to "define what that means."

Is it a big gulp of water? A half glass of water? Or maybe a glass or more? As the ambiguity of medication labels like this demonstrates, patients not only need to read in order to function within today's health care system. They need to be able to use the information they're given—in conversations with care providers and on medication labels or disease management materials—to make informed decisions and effectively manage their care.

"We need a health literate America," says Ruth Parker, M.D., a professor of medicine at Emory University. "We need a population in this country that understands what they need to do to take care of their health. [Health] literacy really is about functioning; it's not just about reading and writing. Can you access and use information to function? The number of people who struggle with that is astounding."

"Health literacy" includes the skills patients need to communicate with providers, read medical information, make decisions about treatments, carry out care regimens, and decide when and how to seek help. Studies have shown that low health literacy, though more prevalent in disadvantaged populations, affects people of all ages and races and varying educational and income levels.

A recent Institute of Medicine (IOM) report, which defined health literacy as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions," found that nearly half of all American adults have limited health literacy. "It affects every domain of communication in a doctor's office, with implications for quality and for safety," says Dean Schillinger, M.D., associate professor of medicine at the University of California San Francisco and San Francisco General Hospital.

The problems associated with low health literacy are magnified for people from non-Western cultures who might not share their physician's perspective on disease or treatment, those who have limited English proficiency, and English-speaking Americans who struggle with basic math and science concepts.

"One of the things we've learned from linguistics is that words by themselves have no meaning, only the potential for meaning," says Yolanda Partida, M.S.W., D.P.A., national program director for Hablamos Juntos, a Robert Wood Johnson Foundation initiative to improve patient–provider communication for Latinos. "When you describe heart palpitations, what is fast or slow to you versus to the doctor? We have frames of reference that help us give meaning to these words, but we may not share them."

Further, research has consistently shown that health literacy is associated with health care outcomes. "You can't have quality care unless you have health literacy woven throughout the program and the care that's provided," says Linda Johnston Lloyd, M.Ed., senior advisor and health literacy coordinator for the Health Resources and Services Administration.

National Efforts
While it's still a relatively new field, health literacy has become "part of the lexicon of many health organizations," says Parker. This recognition has followed the work of many organizations, including the IOM, to define the issue:

  • Parker chaired an American Medical Association (AMA) Council on Scientific Affairs committee on health literacy. It released a report to its members in 1998, concluding "patients with the greatest health care needs may have the least ability to read and comprehend information needed to function successfully as patients." The AMA Foundation went on to develop a "Health Literacy Kit," which includes videos, manuals, and educational tools to help physicians and other health care providers identify patients with low health literacy and provide targeted assistance.
  • Healthy People 2010, a national health promotion and disease prevention initiative, has two health literacy objectives: to develop appropriate written materials for audiences with limited literacy and to improve patients' reading skills.
  • The Agency for Healthcare Research and Quality (AHRQ) published a literature review in January 2004 that identified several studies linking low literacy to adverse health outcomes. Three articles, for example, found a relationship between literacy levels and adults' overall health status.
  • The IOM published, "Health Literacy: A Prescription to End Confusion," in April 2004. The report further defined health literacy and its causal connection to health outcomes, as well as making recommendations to address the problem.
But, says Parker, further research is critical to keep the field moving forward. "We still have a lot that we don't know about how to intervene and affect health outcomes," she says.

Early efforts, which included simplifying health materials and using multimedia approaches, such as computer programs, to educate patients, met with limited success. More recently, the focus has shifted from the patient side of the communication equation to the health care delivery side. "We just, in general, have to do a better job of communicating information to consumers of health care," says Michael S. Wolf, Ph.D., M.P.H., an assistant professor and director of the Health Literacy and Learning Program at Northwestern University.

Measuring Literacy
Between 36 and 45 percent of English-speaking U.S. residents have basic or below-basic general literacy and lack the literacy skills necessary to deal with health-related tasks, according to the 2003 National Assessment of Adult Literacy. But most of these patients aren't identifying themselves to caregivers. "People who have low literacy want to hide it because it is stigmatized in our society," explains Wolf.

Thus, health care professionals' first priority is to find these patients. Two screening tests are primarily used to do this: Rapid Estimate of Adult Literacy in Medicine, or REALM, developed by Terry C. Davis, Ph.D., professor of medicine and pediatrics at Louisiana State University, Shreveport, and colleagues; and Test of Functional Health Literacy in Adults, or TOFHLA, developed by Emory's Parker and colleagues.

The REALM, a word recognition test that can be completed in two minutes, assesses basic reading skills. Patients read a list of 66, progressively more difficult, health-related words and receive a point for each word they pronounce correctly. The TOFHLA measures functional literacy using health care materials, including patient education information, prescription bottle labels, registration forms, and diagnostic test instructions. The short version, S-TOFHLA, can be administered in 12 minutes; there is also a validated Spanish version, TOFHLA-S.

Researchers at the University of North Carolina–Chapel Hill and the University of Arizona have recently developed a new health literacy screening tool, which takes three minutes to complete. The "Newest Vital Sign," so-named to encourage caregivers to assess literacy when they take blood pressure or other vital signs, is a six-question assessment based on an ice cream nutrition label. Unlike the TOFHLA or REALM, it assesses numeracy as well as basic reading skills.

However, some researchers have found that patients have difficultly with the new tool and that it doesn't correlate well with other measures. Further, health literacy experts caution against broad-scale screening until first determining how the information is to be integrated into clinical care. If a health care provider discovers a patient has low health literacy, what should they do next?

According to Nicole Lurie, M.D., M.S.P.H., Paul O'Neill Alcoa Professor of Policy Analysis at RAND, the saliency of health literacy screening and intervention can be increased by targeting it to patient populations at high risk for health literacy problems. One approach she suggests is to identify geographic areas at the state, city, or census tract level where people are more likely to have problems with health literacy, and then to identify providers—including community pharmacists—to design solutions.

Testing Interventions
While there is no quick fix for the problems raised by low health literacy, researchers have begun identifying approaches that hold promise. Wolf, at Northwestern, recently completed a 15-month study at three federally qualified health centers in Michigan. Called the Michigan Cardiovascular Literacy Study, it used the TOFHLA and the Newest Vital Sign to screen patients with hypertension, high blood pressure, and high cholesterol.

Once low-literacy patients with these conditions were identified, health center staff used strategies such as teach backs (where patients tell caregivers what they've learned about their disease or condition) to reinforce their care plans and followed up with these patients on a more regular basis. "In a word," says Wolf, "we bugged them more frequently."

Initial findings suggest that the intervention increased patients' knowledge of their disease and medication regimens; it also raised their level of confidence in managing their conditions. Although it's still too early to tell if it has also improved health outcomes, such as better cholesterol or blood pressure levels, Wolf has received funding to roll out a similar program at two federally qualified health centers in Chicago.

Last year, HealthPartners, a large Midwestern delivery system, decided to focus on health literacy as one of its long-term quality goals. It committed to ensuring its members have the information they need to be effective decision makers.

"We have developed a member decision support program that moves patients through a process that supports them as they consider difficult health care decisions and is adopted to their level of literacy," says George Isham, M.D., M.S., chief health officer and plan medical director for HealthPartners.

Tailoring health care advice to a patient's literacy level, education, and culture is a departure from the system's previous quality improvement projects, which have focused on organizational consistency. HealthPartners also plans to review the educational levels of its instructional materials and to ensure appropriate staff members are available to care for patients with chronic disease.

Early in its inception, the ACP Foundation decided to focus on health literacy, and clarifying prescription drug labels was an obvious place to start. These labels are regulated by state pharmacy boards, rather than the U.S. Food and Drug Administration. "There's really not any consistency or standards," explains Krause. "It's really what the prescriber writes and what the pharmacist decides to get on the label. This is a huge patient safety issue."

As part of its Prescription Drug Labeling Project, the ACP Foundation has begun convening stakeholders to create new labels, test them and, once effective models are identified, advocate for their widespread adoption. Its other health literacy projects have led to the creation of "HEALTH TiPS" tools for physicians, 4 X 6 inch cards that clearly and simply describe what patients need to know about their chronic conditions, and a diabetes self-management guide that is being tested with a group of 225 patients. "All of our work is aimed at making it easier for patients to follow the instructions given to them in the clinical encounter," says Krause.

Though health literacy has found a home within health care quality improvement efforts, its advocates say it needs a much broader base. "From a societal standpoint, for the next generation and the one after that, we really have to look at how we educate people about health," says Parker. "We can do better than we currently do. I don't think it's up to those of us who practice medicine to solve all of that but advocate and be partners."

Related Article
M. Wynia and J. Matiasek (2006) Promising Practices for Patient-Centered Communication with Vulnerable Populations: Examples from Eight Hospitals, The Commonwealth Fund, August.

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