ABCs of Health Care: Educational campaigns are afoot to improve patient understanding and save on unnecessary care and costs. (benefits).

Health-plan sponsors have more to worry about these days than soaring premiums, quality assurance, benefit mandates and liability issues. They also face low "health-care literacy" as more and more patients fail to fully comprehend and therefore follow through with treatment.

But observers of the phenomenon and those on the corporate frontlines say employers can help stem the tide of this alarming public-policy concern that is estimated to cost the United States $73 billion in unnecessary doctor visits, hospitalizations, or longer hospital stays.

The problem occurs when patients misunderstand what their doctors say or cannot follow instructions on prescription drug labels, informed-consent documents, insurance forms, and education materials--or both. The culprit: difficulty reading, comprehending, and using health information.

More than 90 million Americans, or 46 percent of adults and 40 percent of those with chronic illnesses, are considered functionally illiterate, while roughly one-third of senior citizens lack the skills needed to understand basic health-care instructions and their doctors' directions for self-care.

While there are no simple solutions, several promising initiatives have taken shape.

The American Medical Association Foundation in Chicago, the AMA's philanthropic arm and source of the eye-popping numbers mentioned previously, has launched a nationwide educational campaign to improve health-care literacy. Although the effort targets physicians, an AMA official serving as a consultant for the campaign says it offers employers serious food for thought regarding training and educational outreach initiatives that could be beneficial to both company and patient. Moreover, the AMA Alliance, a grassroots organization formed by the spouses of AMA members, is fanning out across the nation to hold meetings on the subject with small community groups.

Corporate Catalysts

The AMA is not alone. In recent years, New York-based Pfizer Inc. has held three high-level conferences on the topic and awards two annual grants of $75,000 to promote a better understanding of health-care literacy as well as solutions. Mindful of how difficult it is to follow instructions on prescriptions, the drug maker has developed a set of health-care literacy principles to help patients read and understand communication materials--an effort that can serve as a model for health-benefit service providers. Pfizer is one of several corporate sponsors of the AMA Foundation's literacy campaign that have provided program-planning grants of $50,000 each.

Intracorp, one of the nation's largest preventive health and disability management providers in Philadelphia, customizes strategies for improving utilization once an employee population's healthcare literacy level has been assessed. Such efforts may include using stories and pictures to illustrate activities related to the medical benefit, as well as appropriate text for employee reading levels. Sensitivity also is shown toward the language, ethnicity, and culture of each employee population.

As part of an effort to educate high-risk employee populations about their conditions and improve treatment compliance, FutureHealth Corp. in Timonium, Md., makes available an audio health library featuring more than 1,100 prerecorded consumer-based health topics in English and Spanish. Customized nursing care and proprietary software also are used to treat the most chronically ill patients, which the company says comprise only about 3 percent to 5 percent of patients but account for more than half the health-care costs in a typical employer group.

Considering how much time employers devote to helping employees select the right health plan, they're in an ideal position to influence behavior on this issue, says Joanne Schwartzberg, the AMA's director of aging and community health who's consulting the AMA Foundation on health-care literacy.

"If you look at the materials and explanations that are handed out," she observes, "for the most part, they're postgraduate-level reading. Employees sign up for their health plan on a leap of faith and aren't really able to understand all the details."

Such confusion has fueled considerable consumer anger toward managed care and, in some cases, even health-plan sponsors, according to Schwartzberg. Another consequence has been the patient-bill-of-rights movement.

"Look at the flood of information management provides at open enrollment," she adds. "It's overwhelming. How can they break it down into smaller pieces? There has to be a better way."

Too Intrusive?

The ability to contain, minimize or control health-care costs by eliminating unnecessary or inappropriate medical services is a driving force for employer involvement on this issue, according to John Ertter, manager of benefits and compensation for Pepco, an electric utility based in Washington.

He's quick to interject, however, that these efforts must be tempered "with a respect for an individual's privacy and inherent right to make certain life decisions without hand-holding from an employer."

While Ertter believes educational outreach is beneficial, he cautions employers against becoming too intrusive. "Employees don't like to be told they need to lose weight, quit smoking, or cut back on alcohol," he says. "Some of those issues are really inflammatory, and we have to be careful about being too aggressive in our attempt to educate employees."

Pepco, along with FutureHealth, is doing its part to strike a balance on employee education. The utility sponsors occasional luncheon wellness seminars with talks on diabetes, bladder control, and the pros and cons of laser eye surgery.

Another FutureHealth partner and foot soldier in the fight against health-care illiteracy is Kathy Lamb, benefits supervisor for Alcoa Eastalco Works in Frederick, Md., whose CareTrack program targets high-risk employee populations and is designed to help employees better understand their health-care benefits.

"There may be times when an employee comes into my office about a spouse having difficulty following doctor's orders, and I'll recommend that they use the program," she says.

Most times, however, employees will refer themselves to the program--particularly because of privacy concerns.

"There are some employees who want to be self-sufficient and resent attempts to help them," Lamb adds, while others are simply seeking reassurance.

Acknowledging a gradual shift away from the organization's paternalistic roots, Lamb says the company is trying to arm health-plan participants with the right educational tools to navigate the healthcare system without frustration.

She credits a unionized environment with raising the overall awareness of benefits.

"I think part of the reason our employees are so informed about their benefits is that they are negotiated as part of a labor contract," she says.

Of the roughly 730 employees at Alcoa Eastalco, about two-thirds belong to a union.

'White--Coat' Syndrome

"The best thing employers can do is educate their employee populations," says Patricia Curran, vice president of sales for FutureHealth Corp., and a registered nurse.

Chronically ill patients "need to know they have a chronic condition that can be controlled," she says. In addition, she believes explaining the concept of experience-rated health insurance--that an individual's cost will increase as the overall group's premium rises--will motivate them to take greater responsibility for their care.

"Managed care needs to recognize that patients are an untapped resource," Curran says. Those efforts may include directing people to smoking cessation programs or diet workshops. "We focus on empowering people to be self-care managers," she adds.

While health-care illiteracy is a significant problem, it isn't the only explanation for chronically ill patients failing to comply with their treatment regimen, Curran says. Other drivers may be economic (an inability to afford co-pays on prescription refills or find transportation to the doctor's office) or rooted in an individual's beliefs (adhering to the precepts of Christian Science, fear of taking too many pills, or feeling defeated by one's genetic makeup).

For some people, the shock of learning that they're diabetic is so devastating that they tune out what their doctor is saying--a phenomenon known as "white-coat" syndrome that she says could fuel noncompliance. "The patient may not be ready to accept a change," says Curran.

Multicultural Approach

While communication is key, the most effective educational campaigns tailor messages to meet the particular needs of specific employee populations.

Perhaps no one knows this better than Bernellyn Carey, who manages health promotion for the Board of Pensions of the Presbyterian Church (U.S.A.) in Philadelphia, which administers health benefits for nearly 50,000 clergy, lay people and their family members.

"The Presbyterian Church is multicultural," she says, adding that health-plan members include ordained pastors who've been through the seminary and lay employees from all walks of life. As such, benefit materials mirror the culturally and educationally diverse work force.

"We try to use many different learning methods and styles because people have various ways they pick up information," Carey says. "We know that people have not always understood some of the messages that are delivered, so we take the opportunity to speak simply and explain things."

With assistance from Intracorp, a health-care literacy trailblazer, educational efforts include workshops, individual and group meetings, self-care books, a glossary of common health-care terms, pamphlets on chronic diseases, videos on certain health topics, and a Web site featuring comprehensive information about employees' health-care benefits.

Adds Jean Chambers, manager of user communications for Intracorp: "Employers can create lists of frequently asked questions and share those lists with appropriate partners." Another goal is to clarify confusing issues, policies or statements. "Supporting frequent ongoing reminders that are appealing, appropriate and informative will promote understanding and drive active participation," she says.

Shame and Blame

One place where significant inroads-and cost savings-can be made in the campaign to raise health-literacy rates is the point of service. Most people fear the emergency room, but to the average health-care illiterate, it can be a refuge from anxiety, guilt, and shame.

Strange as it might sound, the AMA's Schwartzberg believes some patients prefer emergency rooms to doctor's offices because the experience isn't as intensive when it comes to filling out insurance forms.

"We've built this whole health-care system on the false assumption that everyone can read very complicated information when it's tough enough for those with college degrees to figure it out," she says.

"We need to stop blaming patients for being noncompliant, missing appointments, or not understanding their diagnosis," she continues. "There's no shame or blame for the patients. It's our job, as health-care professionals, to help simplify the system."

Although it could require a significant change in corporate culture for some employers to remove health-care literacy barriers, she says it's critical that they develop sensitivities to help people deal with this issue as they would workplace violence or sexual harassment.

Her suggestion for improvement: Employers always can work with their health-care carriers on a universal-and understandable-design for insurance forms and standardized employee communications, while providers get in the habit of routinely asking patients to verbally recap their doctor visits to confirm they understand what it is they need to do.

"Employers have a long legacy of working to improve the health status of their employees through wellness programs, health-education campaigns, brown-bag lunches, brochures and newsletters to educate them about different aspects of their health status," says Carolyn Pare, who chairs the Buyer's Healthcare Action Group, a coalition of health-care purchasers in the Minneapolis-St. Paul area whose mission is to reform the health-care market.

Trouble is, she says, "some information isn't transmitted to patients because they simply accept what a physician tells them or feel they don't have adequate knowledge to ask questions to help them receive better-quality care." Example: diabetics not asking for vision checks.

While the BHCAG isn't examining the level of specificity regarding what doctors are telling their patients, she says the group has had some discussions about the issue within the context of patient safety.

It could prove to be a step in the right direction, considering that educational campaigns are providing a safety net for health-care illiterates.

Coping Mechanisms Used by Low-Literacy Patients

                                 Percent

Bring Someone Who Can Read         98
Watch & Copy Others' Actions       89
Ask for Help from Medical Staff    90
Ask Other Patients                 80

Note: Table made from bar graph