When Dr. Ruth Parker travels around the country talking to providers about the need to focus on health literacy, she rarely encounters anyone who doesn't agree that it's an issue with serious implications for healthcare outcomes.
That's in sharp contrast to a decade ago, she says, when few understood the scope of the problem or the way in which patients' poor understanding of health information could lead to more errors, worse adherence to treatment plans and higher healthcare costs.
“I really don't think people question that this is a problem, and that was absolutely not the case before,” says Parker, a professor of medicine at Emory University in Atlanta, who has been involved in health literacy research for two decades. “The first years in the field were spent defining the problem and looking at its prevalence. Our job now is to figure out what to do about it.”
Parker, who since 2006 has been a member of the Institute of Medicine's Roundtable on Health Literacy—she also served on the IOM's 11-member Committee on Health Literacy, whose work preceded the roundtable—says healthcare providers are beginning to understand that the onus is on them to ensure that patients can successfully navigate the healthcare system and understand their care.
It's something she and her colleagues have been advocating for years, she says. The 10-member roundtable's most recent report, “Ten Attributes of Health Literate Health Care Organizations,” released in June 2012, urges healthcare providers to take it upon themselves to “make it easier for people to navigate, understand and use information and services to take care of their health.”
“Instead of asking how many of our patients are health literate, we need to be asking, 'How able are we to provide care that is navigable?' ” Parker says. “That report was about making yourself part of a care-delivery model that meets people where they are.”
The scope of the problem is daunting. Only 12% of adults are considered to have proficient health literacy levels, meaning they are able to perform complex tasks such as calculating an employee's share of annual health insurance costs. More than a third of U.S. adults, or roughly 77 million people, on the other hand, are categorized as having basic or below-basic levels of health literacy, according to federal data.
Those individuals often struggle to perform basic health-related tasks, such as reading nutrition labels, following medication instructions or adhering to a vaccination schedule.
And although it's an issue that affects all demographic groups, low health literacy rates are most common among patient populations that often already suffer the effects of healthcare disparities, including racial and ethnic minorities, the poor and the uninsured.
In May 2010, HHS released its National Action Plan to Improve Health Literacy, a multipronged strategy to reduce jargon in medical literature, make health-related websites more usable and provide more easy-to-follow health recommendations to the public.
That federal push, coupled with efforts led by the IOM and other groups, has galvanized providers around the issue, says Catina O'Leary, president and CEO of Health Literacy Missouri, a St. Louis-based not-for-profit.
The organization helps hospitals and clinics assess their environments and improve on everything from their websites to patient education materials. It also offers training seminars on health literacy and plans to offer more in-depth provider education on topics such as health literacy and readmissions, and health literacy and the healthcare reform law.
“One of the primary impacts of low health literacy on outcomes is that patients just don't get well,” O'Leary says. “Providers often use words like 'compliance' and 'adherence,' but in health literacy circles, we say it's very hard to adhere or to comply when you don't understand what to do. Then what we get are suboptimal outcomes.”
O'Leary agrees with Parker that providers are beginning to appreciate the implications of low health literacy and are starting to take ownership of the issue in their organizations. It's a difficult task, she says, because it requires providers to learn how to speak differently, changing language they've used for years, which to them sounds straightforward. “It takes practice, coaching and in many cases, a different eye,” she says.
Patient empowerment and engagement are also critical to improving quality, O'Leary says, but she argues that especially when it comes to very complex care, providers need to take the lead in refining and simplifying their approach.
“There are all kinds of ways to do this,” she says. “Some of the best providers I know talk about different treatment strategies with patients. They use technology, they use materials—what's clear is that just saying the words and letting patients walk out the door doesn't cut it anymore.”
One obstacle for many hospitals is finding a “home,” or department, for health literacy in their organizations, O'Leary says. “It feels a little like a generic issue and it's hard for some providers to wrap their head around it.”
In her view, health literacy fits best within hospitals' existing quality improvement, safety and cultural competence departments. But she acknowledges that organizations are taking a variety of approaches.
New York Methodist Hospital, a 591-bed hospital in Brooklyn, for instance, has developed a health literacy program that relies mostly on volunteers, says Mimi Makovitzky, the hospital's director of educational, volunteer and interpreter resources.
Launched in 2006 with grant money from the New York-based United Hospital Fund, the program relies on about 30 volunteers a year, most of whom are pre-med and pre-nursing students, she says. After undergoing several weeks of health literacy training, the volunteers, who commit to staying with the program for at least six months, work in teams in the hospital's six clinics.
In the clinics' waiting rooms, volunteers deliver 15-minute presentations—complete with visual aids—on topics such as managing multiple medications and pediatric nutrition, Makovitzky says. After their presentations, volunteers walk around and answer any specific questions from patients. “Patients are obviously there for appointments, and volunteers have to cope with people getting up and leaving while they're talking.”
Coupled with the hospital's efforts to make health information more understandable, the volunteer program has proved to be an effective way to address health literacy amid tight budgets, she adds.
“There is absolutely no way we could afford to do this without volunteers,” Makovitzky says.
New York Methodist has also made use of volunteers for a more targeted program aimed at preventing readmissions among patients with heart failure.
The volunteers visit with patients before discharge, providing highly simplified instructions and information. They then call patients several times over the next 30 days, reviewing the orders as needed. “We've brought down readmissions with this program,” she says.
Parker, of Emory University, says the ideal approach is one where “health literacy is woven into the infrastructure of an organization, where it is known and measured.” And by measured, she says she means whether an organization monitors how well it presents data and whether navigational paths are understandable.
“It's a tall order,” she says.