Illiteracy: The Health Care Death Trap

Published February 1, 2002

Many months ago, the popular TV show ER ran a sub-plot about a patient who died from an overdose of a prescribed medication. I expected to see lawyers invade the emergency room, demanding lawsuits for yet another alleged medical error.

I was stunned at the unexpected story line: The patient did not know how to read the instructions on the label, and had only a limited ability to understand the verbal instructions he was given.

Health care literacy—the ability to read, understand, and respond appropriately to health care information—is a key component for positive outcomes in medical care. Concerns over health care literacy are not new to ER; the matter was, for example, raised years ago, in the Spring 1998 issue of the Pfizer Journal, in an article titled “Responding to the Challenge of Health Literacy.”

What Constitutes Literacy?

“Is someone who can read a sentence literate?” ask the Pfizer article’s authors. “Not necessarily. Literacy has come to mean not only the ability to read or decode words, but also the ability to comprehend, understand, and use verbal reasoning to achieve objectives. The concept of functional literacy is also relatively new; it is based on the actual competency of people in performing tasks in everyday life.”

The extent of the illiteracy problem in the U.S. is frightening. Notes the Pfizer article, “the 1993 National Adult Literacy Survey (NALS) estimated that some 40 to 44 million people could not read instructions on a prescription label, notes from a teacher, or directions on a map. An additional 50 million people are marginally literate.”

Persons are considered functionally illiterate if they have no reading skills or read below fifth-grade level.

Data Speak Volumes

A 1993-94 NALS conducted in two public hospitals revealed:

  • 23.6 percent of adults with inadequate health literacy did not know how to take medication four times a day. By contrast, 9.4 percent of adults with marginal health literacy, and 4.5 percent with adequate health literacy, were able to understand the instruction.
  • 81.1 percent of patients with inadequate health literacy did not understand the rights and responsibilities section of a Medicaid application. Thirty-one percent of those with marginal health literacy, and 7.3 percent with adequate health literacy, were able to understand that part of the application.

In a 1995-96 study of the relationship between literacy and asthma knowledge, just 31 percent of asthma patients with third-grade reading skills knew they should see a doctor regularly, even when not having an asthma attack. For patients who read at between a fourth- and sixth-grade level, 63 percent understood the importance of seeing a doctor. Eighty percent of asthma patients with seventh- or eighth-grade reading skills, and 93 percent of those who read at the level of a high school graduate, understood the importance of regular doctor visits.

Studies of Medicare enrollees have identified similar relationships between literacy and health. In 1997, the Health Care Financing Administration (HCFA, now CMS, the Center for Medicare and Medicaid Services) studied Medicare enrollees living in a community setting (as opposed to a structured nursing home) and enrolled in a national managed care plan. The study revealed 54.3 percent with inadequate literacy levels did not know how to take medication on an empty stomach; 67.7 percent did not know how to interpret low blood sugar values.

A 1998 study by HCFA revealed only 20 percent of Medicare beneficiaries with an eighth-grade education reported they knew all or most of the Medicare information they need.

Wanted: Improved Communication

Health care illiteracy can be attributed to many factors, including the increasing failure of the U.S. education system to teach reading skills. (See, for example, “NAEP Reading Scores Tell a Grim Tale,” School Reform News, June 2001.)

Literacy in the U.S. is on the decline, and until that changes health care providers and pharmacists must find ways to communicate effectively in a less-literate environment. That requires plain, easy-to-understand language—less medical jargon—and taking into account a patient’s language proficiency, education level and age, as well as cultural, ethnic, and gender considerations.

It’s especially important for health care practitioners to realize that literacy is an individual matter. Many people with low literacy skills do not fit common stereotypes. They can be well-dressed and articulate . . . and they are often ashamed of their inadequate literacy and won’t acknowledge it.

In health care settings, this can be deadly. Persons in need of medical care may simply forego it, rather than ask for help. Others may pretend to understand what is being said to them. Still others may ask for the assistance of office staff, watch what other patients do or ask for their advice, or bring someone with them who does read. Health care practitioners need to be aware of their patients’ literacy level and prepared to communicate with them at that level.

Free Market at Work

Literacy efforts abound in the United States. One aimed specifically at health care literacy is operated by Pfizer Pharmaceuticals. It has sponsored three high-level conferences on the topic, bringing together health care providers, academic researchers, employers, patient advocates, and public policy officials to develop policies and action strategies for change.

In addition, Pfizer annually awards two $75,000 grants, one for research to advance the understanding of health literacy and the other for an intervention program aimed at solving problems associated with health literacy.

“Pfizer’s efforts are intended to generate new knowledge, create solutions, and increase the visibility of the health literacy problem in America,” said Dr. George Flouty, Pfizer’s medical director for public health programs. The company has developed its own set of “Health Literacy Principles” to ensure Pfizer patient communications materials are easy to read and understand.

“We’ve done a lot as a company to promote health literacy, but we also want to make sure our own house is in order,” explained Dorothy Wetzel, Pfizer’s director of consumer marketing and product management. “By 2002, our goal is for all new Pfizer patient communications materials to be written at the 6th grade reading level.”

For more information . . .

see the Spring 1998 issue of The Pfizer Journal, devoted to “responding to the challenge of health literacy.” The entire issue is available on the Internet in Adobe Acrobat’s PDF format at

More information about the Pfizer Health Literacy Initiative is available on the Internet at