This article first appeared in the St. Louis Beacon: Enisa Muratovic didn't quite know what to make of the charade-like sight of her son's pediatrician looking at her and banging on a lead pipe in the examination room.
The scene turned out to be the doctor's well-meaning but futile attempt to inform Muratovic that her son had an elevated level of lead in his blood. But the incident was bewildering to Muratovic, a Bosnian immigrant who spoke limited English at the time. She left the doctor's office still unsure what was wrong with her baby.
"I felt confused and afraid," she said.
The incident, mentioned in a Health Literacy Missouri newsletter, addresses a communication gap involving a Bosnian family. But the doctor-patient communication gap in St. Louis is probably more pronounced among blacks on the north side, where health outcomes are worse than in any other part of the city.
Health literacy is the degree to which people can get and understand basic health information to make decisions and take appropriate action, explains Arthur Culbert. He is president and chief executive officer of Health Literacy Missouri, a year-old nonprofit funded by the Missouri Foundation for Health.
It helps, he and others say, to present the information in language that is familiar to patients.
"There is a real need for providers to understand patients, but also for patients to ask doctors the right questions and engage in healthy behavior," Culbert says.
Blacks Bear the Greatest Burden
In Missouri, Culbert says, an estimated 1.6 million adults are affected by health literacy. When patients misunderstand the doctor or the written instructions or the labels on medicine bottles, problems result. Health illiteracy can lead to higher use of emergency rooms, errors in medications, less patient follow through with prescribed treatment and less focus on preventive care, he says. And, in some cases, Culbert adds, "low health literacy can be a matter of life and death." That's also the view of the American Medical Association. It points to low health literacy as a stronger predictor of a person's health than age, income, employment status, education level and race.
Beyond the human cost, Culbert says, is the fact that low health literacy is thought to add at least $3 billion in avoidable costs to medical care in Missouri each year.
The problem is particularly acute with black patients. Studies show that they receive fewer medical services or too many of the wrong services than other groups. One Dartmouth University study found, for example, that black Missourians with diabetes were four times as likely to have a limb amputated than whites. The black patients also were less likely than whites to receive annual hemoglobin A1c testing for diabetes. The AMA notes that the disparity involves race and goes beyond it. The medical group apologized for once excluding black physicians from its membership and has begun offering continuing medical education courses to make doctors more culturally sensitive about certain habits and practices.
One AMA course points out instances in which doctors offered more care options to white patients than to blacks and Hispanics, including treatments for heart disease, such as catheterization, angioplasty and bypass surgery. Doctors in the AMA's continuing medical education course were also told that only 49 percent of Asian women got Pap tests, compared to the national average of 64 percent.
Barnes-Jewish Hospital Takes The Lead
Barnes-Jewish Hospital is the area's only health system to focus on health literacy and health disparity throughout its health-care system. The woman leading the program is Brenda Battle. During a presentation last summer at a seminar in the Loop, she acknowledged that some doctors and other health professionals were lukewarm to the program at the start. But she says many are now embracing it as they understand that the goal is to improve health quality and outcomes.
Her presentation placed much emphasis on doctor-patient communication, noting that any mismatch between what the physician says and what the patient hears can hurt the provision of health care.
She also talked about the need to break down medical jargon into terms more familiar to the general public. A few examples: analgesic means painkiller; carcinoma means cancer; benign means not cancerous; lipids means fats in the blood; and referral means sending the patient to another doctor. She also discussed how patients can get more out of sessions with their doctors by coming prepared to explain their condition and get answers. She said it helps when patients explain:
- Why they are seeking help
- What might have caused the condition and when
- The severity of the condition
- Treatments already tried
- Expectations from the treatment as well as the treatment that they think they should receive.
Putting Patient Care in Context
Numerous groups have taken a variety of approaches to empowering patients and sensitizing providers. One group is the Maternal, Child and Family Health Coalition, which partners with the Nurses for Newborn Foundation to give youngsters healthy starts in life. Kendra Copanas, executive director of the Maternal Child Health Coalition, says it's important to give health-care providers a "snapshot view of their patient's world." The group sponsors a tour through neighborhoods served by the Healthy Start program. The tour, she says, can help a provider understand the context, for example, when seeing "a patient repeatedly in the hospital for asthma attacks. If you have vacant buildings next door to your home, you can't control the rodents and the roaches, which are asthma triggers."
Health Literacy
The National Institutes of Health shares these goals for health literacy from a Healthy People 2010 report:
- Develop appropriate written materials for audiences with limited literacy.
- Health communicators should use existing resources to create plain language health communications targeted to this population.
- Professional publications and Federal documents already provide the necessary criteria.
- Improve the reading skills of persons with limited literacy.
- Health literacy programs can be tailored to target skill improvement.
- These programs could be offered through a variety of organizations, such as libraries, schools, and community groups.
Read more about Healthy People 2010.
A more intense approach to health literacy is offered through the Inclusion Institute for Healthcare, a program sponsored by the National Conference for Community & Justice of Metropolitan St. Louis. NCCJ's executive director, Denise M. DeCou, says this issue has emerged because socially and economically disadvantaged people were discouraged by their encounters with health-care professionals. She adds that part of the problem is that doctors use jargon. "If people go to a doctor or health center and the information that they are getting is not information that they understand, they may tend to not go."
The program has touched only a small portion of providers, about 85 with a goal of 100.
Getting Beyond Labels
David J. Martineau, NCCJ's program manager, says the institute's approach can help build a network of workers committed to changing the "dynamics that perpetuate health disparities."
In a typical retreat session, participants are seated in a circle and discuss a range of issues, such as stereotypes that some providers might have about patients. The issue might focus less on race than on behavior associated with a patient's class, usually low income.
One example of the unconscious bias, he says, involves a patient who might be a familiar face in the ER. Martineau says the patient's chart might have the initials "FF" next to the patient's name, meaning he's a frequent flyer or someone who "comes back chronically, who came back without following orders."
He says the frequent flyer is just one of many code names or labels that a provider might use. Others who may not know the patient might make judgments based on the label. This can lead to biases even before the provider gets to know the patient, he says.
The labels can defeat the goal of health care because the patient might not like the way he or she is treated and "might not return for follow-up care, and that produces a gap in the care."
Stereotypes, he says, can help people make sense of the world.
"But when we apply (stereotypes) to people on the basis of race or gender, we make huge mistakes."
This story was written with the assistance of the Dennis A. Hunt Fund for Health Journalism, which is administered by the California Endowment Health Journalism Fellowships, a program of USC's Annenberg School for Communication and Journalism. Funding for health reporting is provided in part by the Missouri Foundation for Health, a philanthropic organization whose vision is to improve the health of the people in the communities it serves.
Worlds Apart
This article is part of a series that examines health-care disparities that persist in the St. Louis area, despite the fact that the region is blessed with some of the finest medical facilities in the world.
