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The Price of Medical Illiteracy

Not understanding what doctors say is costly for patients' health and for health care itself.

A patient is released from the hospital after surgery. Yet too often, that patient comes back, sometimes in serious and potentially life-threatening conditions. The patient didn’t understand the post-operative directions he’d been given. That’s when the system starts to unravel.

This is the sort of thing Dr. Andrew Morris-Singer sees all too often as a general practitioner at the Brigham and Women’s Hospital in Boston. The patient may not have been told how to take the medication prescribed or what other medications to avoid when taking it. If the patient did receive such instructions, there’s a 50-50 chance that he didn’t understand those instructions, either about possible negative interactions with other drugs or why the drug had even been prescribed in the first place.

That’s just one example of the type of thing that can go badly wrong because of a breakdown in -- or a complete absence of -- communication and comprehension between provider and patient. “Health illiteracy is a major problem insofar as patients understanding what the provider says to them,” Morris-Singer says. But beyond that, he adds, “50 percent of patients can’t relay accurate information about what they’re told after an appointment with a health-care provider, and they can’t tell you what meds they’re on or why they’re on them.”

While confusion about medications tops the list of problems that result from health illiteracy, it hardly stops there. Numerous studies indicate that those with chronic diseases like high blood pressure, asthma or even HIV/AIDS have no clear comprehension of what the disease is or how to treat it. Fifty percent of diabetics are not getting proper care because they lack an understanding of their condition and how to manage it.

Technically, health literacy is defined by the U.S. Department of Health and Human Services (HHS) as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate decisions.” The percentage of the U.S. population who can do so is shockingly low. Only 10 percent are fully literate when it comes to health instructions, according to HHS’s Office of Disease Prevention and Health Promotion (ODPHP). Nearly 15 percent are totally health illiterate, mostly due to language barriers.

In between those extremes, around 40 percent of the adults in the U.S. have only “basic” or “below basic” health literacy levels. People with basic health literacy have trouble deciphering clearly written pamphlets explaining, say, medical testing. Those with below basic literacy have trouble with forms of all sorts, and with basic directions for taking medication.

The human cost is telling, especially for the elderly and those not fluent in English: Low health literacy is linked to higher rates of disease and mortality, as many as 100,000 deaths per year. Among all adults -- regardless of age or nationality -- low health literacy adds up to more frequent use of hospital emergency rooms and inpatient care, and a much lower likelihood that people will follow through on basic preventive measures such as flu shots and mammograms, according to a report by HHS’s Agency for Healthcare Research and Quality (AHRQ).

The national health-care system is already expensive without piling on the high cost of health illiteracy. While there are no reliable or statistically valid studies of its cost, the ODPHP estimates that limited health literacy runs the nation between $106 billion and $236 billion annually. “When one accounts for the future costs that result from current actions (or lack of action),” the ODPHP report says, “the real present day cost of limited health literacy might be closer to $1.6 to $3.6 trillion.”

Obviously a huge portion of that fiscal fallout lands directly on federal, state and local governments. To begin to counter the effects, the feds are in the midst of a strong push toward health literacy nationwide. This year, AHRQ is providing $100 million in competitive grants to states in support of health literacy initiatives, and the ODPHP has published a national action plan on how to improve health literacy. Meanwhile, the Centers for Disease Control and Prevention is monitoring and mapping which states have initiatives and is supplying supporting material and information on how to increase citizens’ medical literacy.

That aggressive and comprehensive push is now cascading down to states and localities. Led by a handful of bellwether states, including Kentucky, Missouri and Wisconsin, loose coalitions have been forming health literacy consortia to address the problem.

While tools are available to help state and local officials pull together literacy efforts, they tend to be ad hoc, built from the ground up and shaped according to local circumstance. Health literacy consortia consist of a wide variety of disparate players and interests ranging from state health extensions, universities, provider networks, state and local health departments, hospitals, and even local libraries and adult literacy programs. Funding tends to be tenuous, frequently provided by local foundations with a direct interest in improving the quality of health care and holding down costs.

Asked about the state of improving health literacy, Dr. Arthur J. Culbert, president and CEO of Health Literacy Missouri, is blunt about where efforts stand: “I don’t think we’re doing great, but the movement has just started.”

Recent trends in health-care delivery, such as the current migration toward medical homes and patient-centered care, may play into the drive to improve health literacy. As both an internal medicine and infectious disease physician with the Arkansas Department of Health Office of Strategic Initiatives, Dr. Jennifer Dillaha says she has seen firsthand the difficulty patients have understanding what providers are talking about. A significant characteristic of patient-centered care is ensuring that patients understand basic medical terms and instructions. “We have a real opportunity right now with the coming of health-care reform,” Dillaha says, “to improve the system so that it truly is patient centered.”

For states and localities, one of the more daunting aspects of dealing with health illiteracy is the linguistic barrier -- the restricted ability of patients to read, speak, write or understand the language doctors and nurses are using. This is often compounded by cultural issues, leading to the inability of a patient to communicate symptoms, understand medication instructions and, in general, make their way through the fragmented health-care system.

The San Antonio Health Literacy Initiative found one way to address a piece of this issue. Researchers there first looked at how patients navigated the hospital system. With that assessment in hand, they created a “toolkit” aimed at helping those with low proficiency in English understand how and when to use the local emergency medical system.

Patient illiteracy is not merely a result of patients who may be poorly educated or aren’t proficient in English. Providers -- most notoriously doctors -- have a long and storied record of being profoundly poor communicators. That’s where the bulk of the responsibility for medical literacy should lie, says Morris-Singer. “It’s OK to sit with a patient and say, ‘Take this antibiotic,’ but did you write it down and explain why? Can the patient even read? Do they understand what the word ‘vertigo’ [a common side effect of numerous prescription drugs] means?”

That’s why one component of Kentucky’s medical literacy program is training for providers. “We’re doing ‘Health Literacy 101,’” says Deborah Murray, a member of the Health Literacy Kentucky coalition. The program starts by describing the scope of the problem to the health professional and the costs associated with it. The training also identifies cues indicating limited health literacy among patients and offers three specific techniques that in practice work effectively. “Health literacy is as much of a responsibility of the health-care provider as it is the consumer,” says Murray, who is also an associate director for health education at the University of Kentucky’s School of Human Environmental Sciences. “If you as a provider are not communicating and interacting with the patient on an appropriate level then you’re not succeeding, and that’s what costs us more money; it’s not all the consumers’ fault.”

Actually, if there’s any clear culprit in the epidemic of medical illiteracy, it is medical schools, which have resisted making proper communication skills a mandatory part of a basic medical education. That’s where Primary Care Progress comes in. Its president, Morris-Singer, describes it as an organization devoted to pushing medical schools to add effective patient communication to its regular curriculum.

As much as policymakers and health-care providers emphasize that better communication leads to better care, it’s no secret that cost is ultimately driving the rapidly forming health literacy initiatives nationwide. As Culbert points out, under rules passed as part of the Patient Protection and Affordable Care Act, hospitals are going to start getting hit financially by the feds for any Medicaid or Medicare patient readmitted within 30 days of discharge. “That’s one of the big drivers,” Culbert says. “So hospitals have to have a discharge system and policy that makes sense and that people understand.”

Some hospitals make sure all patient education materials are written at a sixth-grade reading level, and that supplemental instruction materials such as videos, models, pictures and universal symbols are used to help fill communication gaps. They may also employ tools like patient teach-back, where patients repeat what they’ve just learned about their care.

But increasing health literacy won’t solve all the nation’s health woes. Health care in the U.S. will continue to consist of small and large, simple and complex systems that involve players ranging from school nurses to high-paid insurance executives and everyone in between. Any clear connections between behavior, cost and outcomes will always be tricky to draw.

But getting all the players to focus on making those systems as user-friendly as possible is a big part of making health-care systems effective and sustainable. “My job,” says Morris-Singer, “has as much to do with communicating with my patient about what is going on with their health as it does diagnosing their health problem.”

Talking Health

Two decades of research indicates that today’s health information is presented in a way that isn’t usable by the average adult. Nearly 9 out of 10 adults have trouble understanding the health information provided them, according to the U.S. Department of Education. To improve the health and quality of life of millions of people in the United States, health-care professionals can take these steps to help improve health literacy:

  • Use patient-centered technologies and different tools, including vetted pictures, models and scorecards, to support written and oral communication with patients and their caregivers
  • Use proven methods of checking patient understanding, such as the teach-back method, to ensure that patients understand health-care information and risk and benefit tradeoffs associated with treatments, procedures, tests and medical devices
  • Use technology, including social media, to expand patients’ access to the health-care team and information
  • Advocate for requirements in continuing education for health-care providers who have been working in the field but have not participated in health literacy, cultural competency and language access training
  • Create patient-friendly environments that facilitate communication by using architecture, images and language to reflect the community and its values
Source: National Action Plan to Improve Health Literacy, U.S. Department of Health and Human Services

Tina Trenkner is the Deputy Editor for She edits the Technology and Health newsletters.
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