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Speaking the Patient's Language
Low health literacy is a serious problem; some say pharmaceutical companies have a responsibility to make information about drugs easy to understand

by Mia Burns
www.medadnews.com

Some people stay sick, not because they are untreated or undiagnosed, but because they do not know how to take their medicine. Due to complex, scientific language, many people cannot understand the directions for taking their medication or the patient-education programs that are supposed to help them. Patients who do not understand how to take their medications may take the drugs incorrectly or not take them at all. The consequences of taking medication incorrectly for patients is poor health outcomes. For the pharmaceutical industry, the result is billions of dollars in lost sales as patients fail to refill their prescriptions for chronic conditions or do not get the prescriptions filled at all.

Health literacy is the ability to read, understand, and act on health information. In the United States, the average adult reads between the eighth-grade and ninth-grade levels. One in five adults reads at or below the fifth-grade level, and two of five Americans 65 years old or older read at or below a fifth-grade level. Most health-care materials are written at the 10th-grade level or higher.

"Many people can read and pronounce the words, but they do not understand the content," says Ruth Parker, M.D., associate professor of medicine at Emory University. "They are not able to access the information, either from the printed or from the oral comprehension. They may be able to pronounce it, but they do not understand it. The literacy refers to the ability to understand and act on it."

Studies have determined that people with marginal literacy skills have less knowledge about the diseases that can affect them and their treatment plans than literate patients, and people with low literacy skills are at higher risk of hospitalization than people with adequate literacy skills. People with marginal literacy skills make more medication or treatment errors, are less able to comply with treatments, fail to seek preventive care, and lack the self-empowerment to successfully negotiate the health-care system. Other problems include language barriers and cultural and personal perspectives about the American health-care system.

"In my opinion, it is not just a matter of health literacy, it is a matter of literacy overall," says Glenna Crooks, Ph.D., president of Strategic Health Policy International (strategichealthpolicy.com). "We have a such a substantial challenge with that in the United States, particularly when we look at the immigrants who are arriving."

Dr. Crooks says communication becomes a challenge not only in terms of language barriers, but because of cultural perspectives and biases about diseases. "Not every culture has a biomedical, biomechanical view of health and disease that we have as Americans," she says. "Trying to explain how the body works based on what we know and how we need to take care of it is a real challenge. The work that Pfizer and others may be doing in health literacy is critically important."

Dr. Crooks is referring to a new initiative taken by Pfizer Inc. to bring to light the health-literacy issue. Pfizer is working together with the American Medical Association Foundation in a campaign designed to cure the confusion in health information. The vision of the foundation is to achieve total awareness in the medical community that health literacy must be recognized and addressed to obtain effective medical care. According to a survey sponsored by Pfizer (pfizer.com), low health literacy can affect people of any race, ethnicity, and income level.

"If it is a younger age group, they have not been taught to read well enough," says Joseph A. Riggs, M.D., trustee, American Medical Association, and president of the American Medical Association Foundation (ama-assn.org). "Looking at the statistics, there are 40 million Americans who cannot read beyond the third-grade level. There are 50 million more Americans who cannot read beyond the seventh-grade level. There is a problem with our education system. They are not being taught to read and understand and comprehend. That is a big factor."

According to Pfizer executives, the company recognizes its obligation to make information about those medicines and the diseases they treat easier for patients to understand. "It is the responsibility of everyone involved in health care to offer medical information to patients in a way that is clear, understandable, and truly accessible," says Barbara DeBuono, M.D., senior medical director of public health at Pfizer.

The Consumer Health Information Corp. (consumer-health.com) has identified a sequence of steps for consumers to follow to achieve health literacy. These steps are to read the information, understand the information, be convinced the information is important, take action, and see results from the therapy.

Dorothy L. Smith, Pharm.D., president of Consumer Health Information, told Med Ad News literacy is more than bringing information down to the appropriate reading level. "They have to be convinced to take the medication," Dr. Smith says. "Ten percent of people in the doctor’s office decide not to even fill the prescription, but they do not tell anybody."

According to Consumer Health Information, about 11% of women and 6.4% of men do not fill their prescriptions. The lost sales from unfilled and unrefilled prescriptions are $8 billion annually. Beyond the lost sales, poor health outcomes hurt not only patients, but cost the nation’s health-care system about $73 billion annually. Individuals with low health literacy commonly make unnecessary doctor visits and have longer hospitalization stays. Low health literacy affects the health of 90 million Americans.

As an example of how noncompliance can have an effect on health-care costs, half of the people who are diagnosed with hypertension stop taking their medications in the first year because they are not convinced that it is helping them. "When 50% of them stop, that group could suffer more serious complications and kidney damage, a stroke, or other serious problems that require not only emergency and hospitalization, but can have some people end up in nursing homes," Dr. Smith says.

Unfilled prescriptions and failure to comply with medication regimens are common events among the elderly. Because the elderly are more apt to have chronic illnesses, and poor health literacy is more common among the elderly, this is a dangerous situation, Dr. Parker says.

For health-care outcomes to improve, communication between health-care professionals and patients should be as clear as possible. Dr. Riggs says physicians sometimes become caught up in other tasks and do not confirm that their patients understand what they have been told. Despite the many demands on their time, physicians need to take the time to make sure patients comprehend what they need to do before they leave a doctor’s office.

"Physicians tend to talk in medical terms that they understand very well, that their staff understands very well, but the patient doesn’t understand," Dr. Riggs told Med Ad News. "We need to write out instructions and we need to be able to speak to patients in plain English so they understand. We need to write instructions at the fifth-grade level if we want people to understand. We are not trying to insult anybody, we are trying to be realistic."

According to Dr. Crooks, patients need to take responsibility for their own health and not leave everything entirely up to health-care professionals. But patients need to receive more information along with incentives to take more control over their health.

"If only half of the drugs being prescribed are being filled, and if only a portion of those are being refilled for chronic medicines, no matter how good the diagnosis is and how good the products are, they are not going to help improve the outcome of the patient," Dr. Crooks says.

There are more fundamental issues than patients not understanding their physicians. Because they have roles as healers, pharmaceutical companies have a responsibility to ensure that accurate information reaches patients.

"The pharmaceutical industry is a healer; anyone who touches health care is a healer," Dr. Crooks says. "Every healer needs to be in communication with patients. In my view, the industry has no choice. It must go directly to consumers. It must be in communication with patients, and it must give them information about medicine and diseases in the way that the pharmaceutical industry is expert."

Dr. Smith says when addressing health literacy, pharmaceutical companies and physicians should prepare materials from the perspective of the patient.

"We have to put ourselves in the shoes of the patient," Dr. Smith says. "We need to pretend that we are a patient, and if we are a patient we need information that we can understand, that we can trust, and that we will keep so that we can refer to. The written instructions prepared by a pharmaceutical company will be more effective if the health-care professional can refer to them during their counseling."

©2003 Engel Publishing Partners