Doctors search for cure to health illiteracy epidemic

Former New York Mayor Rudy Giuliani thought he was cancer-free when his doctor told him his prostate biopsy was “positive.”

“I keep getting positive and negative mixed up,” Giuliani told Dignity Health last year. “I kind of think of negative as bad and positive as good.”

But his positive biopsy in 2000 meant doctors had detected cancer cells.

Health literacy, the ability to obtain, understand, and act on needed health information, has been a hot topic for years. While overall illiteracy contributes to the problem, many educated patients, like Giuliani, also find understanding complex health information a challenge. Among patients surveyed by Emory University’s Mark Williams, a health literacy expert, 26 percent didn’t understand when their next appointment was scheduled, 42 percent didn’t comprehend instructions to “take on an empty stomach,” and 86 percent couldn’t follow the rights and responsibilities of a Medicaid application.

“Health literacy is different from intelligence,” Sunil Kripalani, co-director of the Center for Effective Health Communication at Vanderbilt University, told U.S. News and World Report. “People may be very educated and functioning fine in other contexts but may struggle to navigate the healthcare system.”

Medical workers learn 24,000 new words when they enter healthcare, enough to qualify as a new language. But many patients struggle to understand basic terms like “positive,” in a medical setting. Low health literacy has been linked to higher rates of hospitalization and re-admission and less frequent use of preventive services like cancer screenings. A 2006 report from the U.S. Department of Health and Human Services found more than one-third of adults have difficulty with common health tasks such as understanding discharge instructions from the hospital or interpreting lab results.

All of this misunderstanding comes with a high price tag. Experts estimate the cost of low health literacy at between $106 billion and $238 billion annually, representing as much as 17 percent of healthcare expenditures.

In 2010, the Obama administration unveiled the National Action Plan to Improve Health Literacy, which was designed to improve “communication, decision-making, and access to health services.” President Barack Obama also signed the Plain Writing Act, which directed federal agencies to use plain language in their materials. In 2011, the Joint Commission for the Accreditation of Hospitals required the use of plain-language materials and to “communicate in a manner that meets the patient’s oral and written communication needs” in providing care.

But the problem persists.

A 2016 study from Washington University found that lower health literacy is linked with increased medication errors among patients diagnosed with Type 2 diabetes, and an overall increase in new diabetes-related diagnoses. Additional studies revealed older Americans were at higher risk. According to the National Center for Education Statistics, adults 65 and older had lower average health literacy than younger adults.

“With the graying of America, changing demographics and increased access to care from the Affordable Care Act, it’s extremely important to find ways to improve health literacy,” Terri Ann Parnell, founder of Health Literacy Partners told Nurse.com.

And while doctors and nurses scramble to find better ways to communicate with their patients, many believe patients also bear some responsibility for improving the situation.

When Toni Cordell Seiple went to the doctor with a prolapsed uterus, her doctor in Griffin, Ga., assured her it was an easy “repair.” Upon admission to the hospital, Seiple signed an informed consent form she had not read because she didn’t “read all that well.”

“I never would have read it because I was intimidated by that much text,” Seiple told USA Today.

Weeks later, in the follow-up doctor’s visit, Seiple was stunned to learn she had consented to a hysterectomy.

“How could I be so stupid?” Seiple said in an American Medical Association Foundation video. “I realized I hadn’t asked the questions I should have asked.”

Medical professionals often fear simpler language will come across as demeaning, but so far, that hasn’t been the case.

“People worry about dumbing things down, but in the research, no one has ever complained that things were too simple,” Cindy Brach, a senior policy analyst at the Agency for Healthcare Research and Quality told The Washington Post. “Everybody wants clear communication.”