Lost in translation
Health communication researchers devise strategies to empower people to make informed decisions about their health
Sept. 26, 2011
In the middle of the night, while soothing her feverish daughter, a mother strains to read the instructions on the bottle of Children’s Tylenol. The dosage instructions state one and one-half teaspoons, but the mother gives her daughter one and one-half tablespoons — more than four times the recommended dosage.
A 57-year-old man about to undergo radiation therapy is overwhelmed by the amount of paperwork he has to sign and is confused by the consent forms. Not wanting to draw attention to himself, he quickly signs the forms not understanding the disclosure that heart disease is a potential side effect of the type of radiation he’s about to receive.
This patient and caregiver are among the more than 90 million American adults with low health literacy.
Health literacy is defined as an individual’s ability to obtain, process and act appropriately on health information. October is health literacy month, a time to better understand the plight of those who have trouble understanding instructions on medications, appointment slips, medical education brochures, doctor’s directions and consent forms and who lack the ability to negotiate a complex health care system.
Researchers in The University of Texas at Austin’s College of Communication are working on ways to improve health literacy and enable people to make informed decisions about their health through clear and persuasive communication. Their work is already leading to public health campaigns aimed at women thinking of becoming pregnant and proposed new medical forms to be used across the state.
“There are people in the medical field who want to educate people into submission and there are people in the advertising industry who only want to persuade people; I land somewhere in the middle,” said Michael Mackert, an assistant professor in the Department of Advertising.
Poor health literacy is a stronger predictor of a person’s health than age, income, employment status, education level or race, according to the American Medical Association. The elderly, minorities, immigrants and low income populations are the most vulnerable. It is not, however, an indicator of intelligence as many people falsely believe.
Health literacy also has a significant impact on the entire U.S. health care system. For example, people with low health literacy use the emergency room more than other Americans for routine problems, rather than visiting a primary care physician, which is less expensive. The National Academy of Sciences estimates low health literacy costs the nation about $69 billion per year.
Mackert is investigating how to craft health messages for low health literacy populations and exploring strategies for reaching them.
He collaborates with faculty in the schools of nursing, education and social work and the Department of Kinesiology and Health Education on health issues ranging from childhood obesity to genetic testing.
“They know the health content and how to manage one-on-one health education, and I can help translate that information to a mass communication level.”
Each year, about 250 babies in Texas are born with neural tube defects, such as spina bifida or anencephaly. These defects could be reduced by up to 70 percent if all women who may become pregnant begin taking folic acid at least a month before conceiving. Mackert is currently evaluating and developing campaigns to promote folic acid usage among women before they conceive.
With a team of graduate students, he conducted a series of focus groups at the People’s Community Clinic, a nonprofit medical clinic in Austin, to find out whether expectant mothers understood the importance of folic acid and to explore ways to help influence them.
“People’s Community Clinic has always recognized the importance of folic acid use among our patients prior to pregnancy, so we discuss folic acid use whenever possible: with female teens during well child exams, at annual exams for women and at family planning health education appointments,” said Dana Carpenter, who, until recently, served as health education and special projects supervisor at the clinic.
“Each of these women understood that folic acid was important to their baby’s health, but 100 percent of them only found out about it when they became pregnant for the first time, which is too late for their baby to reap the benefits of folic acid,” said Mackert.
“There was clearly a gap between our educational efforts and patient behavior,” said Carpenter.
In collaboration with Erin Donovan-Kicken, an assistant professor in the Department of Communication Studies, and their students, Mackert developed a pilot program to promote multivitamin use among Latinas long before they become sexually active or pregnant.
The two-pronged campaign relied on posters to target Austin-area adolescents and their mothers in Austin-area health clinics.
The “What’s Her Secret” campaign targeting young women featured messages touting the short-term benefits of taking a multivitamin, such as better nails, strength for sports, more energy and shinier hair. The other half of the campaign, “You Got Lucky,” targeted their mothers with the message that starting their daughters on a multivitamin now will reap benefits for their daughters, including cancer prevention and lower risk for heart disease and birth defects.
Mackert is hoping to partner with the National Institutes of Health next year to implement the campaigns citywide in Austin.
“It’s an innovative campaign targeting both young women and their mothers, and the focus is on why folic acid is important regardless of pregnancy status,” said Carpenter. “His campaigns concentrate on what is important to each target audience: for young women, it’s about looking and feeling better, and for mothers, it’s about protecting their daughters. This is a progressive approach.”
Health literacy also involves making sense of the vast amount of information available in doctor’s offices, books, magazines and online.
When searching for health information online, for example, a health literate person will go to a credible Web site such as the mayoclinic.com or WebMD.com, instead of the first discussion forum they come across in a blog.
Health literacy skills are also put to use when navigating insurance benefits and signing medical documents, such as consent and insurance forms. Many of these are written at high school level or higher, though the average American reads at an 8th grade level or below, according to the National Adult Literacy Survey.
In Texas, hospitals and doctors’ offices use the same standardized consent forms for medical and surgical procedures, radiation therapy and hysterectomies. But these forms, written by well-meaning health care professionals and lawyers, use medical jargon that’s confusing.
Acknowledging the need to update the Texas medical consent forms, the Texas Medical Disclosure Panel, a panel appointed by the Commissioner of the Texas Department of State Health Services, tapped Donovan-Kicken to help improve the consent forms through clearer, simpler language and a more thoughtful presentation of the information.
“The purpose of a medical consent form is to describe the risks of a procedure so patients can make an informed decision about whether to undergo that procedure — this is the heart of informed consent,” said Donovan-Kicken. “Not surprisingly, we found that the amount of information on the consent forms was overwhelming and repetitive. This helps to explain why previous research shows that only half of patients even read their consent forms.”
Donovan-Kicken along with a team of undergraduate students from her Health Communication class and Communication Studies graduate students set out to test the clarity of medical consent forms for cardiac catheterization (a procedure used to diagnose and treat certain heart conditions) and laparoscopic (gall bladder) surgery. The team conducted face-to-face interviews with patients ranging from high to low health literacy. The research participants, recruited from clinic waiting rooms, hospitals and through word of mouth, were asked to translate the consent forms into everyday language as if they were describing it to a family member and to report their perceptions of the overall quality of the document.
Fewer than a quarter of the participants, including people expected to fall in the high health literacy category, were able to effectively translate the information. Health literacy levels were not an important predictor of how well people were able to translate the forms.
Participants found the form difficult to understand overall and said information about the risks was overwhelming and confusing, particularly information about the risks of general anesthesia, which is included in most medical consent forms in Texas.
“We tend to inundate patients with information, but our research shows that more information is not always the answer. It’s the quality of the messaging, not the quantity, that enables people to manage health information,” she said.
Donovan-Kicken and the state panel agreed that the section on the risks of general anesthesia should be removed from the consent forms and put into a separate, more specific form. She also advised removing medical jargon and including clear and concise language. New consent forms could be released next year after a public review process.
She also suggests incorporating photos or illustrations into consent forms, or creating an interactive form on which patients could take a quiz to evaluate their understanding of the procedure and ask further questions.
“If there were an unlimited budget, I would recommend providing patients with iPads or a smartphone application where people could watch a short informational video followed by a quiz. Health care providers would see which questions the patient got wrong and know which risks need further discussion,” she said.
“Health care providers need to think about informed consent as a process that starts when the doctor sees a patient, not when it’s time to sign the consent form.”
Not About Intelligence
Contrary to popular opinion, health literacy does not correlate to intelligence. It does, however, require strong reading, listening and analytical skills and the ability to apply them to a health situation. So while an individual may function well at home and at work, their skills may be inadequate in a health care environment.
“Our research has shown that nearly half of college students struggle with health literacy, so this is not about intelligence,” said Mackert.
Based on research into public perceptions of health literacy, Mackert, Donovan-Kicken and others in the Departments of Advertising and Communication Studies have recently recommended that when creating public health campaigns, researchers and policy makers should include messages to combat the perception that low health literacy equates to low intelligence.
Looking forward, College of Communication researchers hope to study how drug ads are regulated. Currently, advertisements are written to satisfy lawyers and the Food and Drug Administration and are extremely confusing.
“These ads have the opportunity to serve as an educational tool to raise awareness of symptoms of illness,” said Mackert. “Unfortunately, they’re written in a way that leaves out the people who could most benefit from them — people who don’t see a doctor regularly.”
For more information, contact: Erin Geisler, KUT Radio, College of Communication, (512) 475-8071.