To that end, they relied on focus groups to vet the paperwork for medical jargon or unclear directions, quickly learning not to assume anything, says Michael Paasche-Orlow, M.D. "Several focus groups into this process, somebody asked me in a session, 'You know, I really like this stuff and I think it's nice and understandable. But what part of the body is this discharge coming from?' I was horrified."
These days the discharge paperwork that patients receive as part of the Boston facility's highly regarded Project RED (Re-Engineered Discharge Project) bears a more cumbersome but also more decipherable heading: After Hospital Care Plan.
Paasche-Orlow, the project's director of health literacy, says the story illustrates the sometimes hidden and yet crucial comprehension gaps that can hamper optimal medical care. Roughly 80 million Americans, according to estimates by federal officials, navigate the complexities of the U.S. health system without sufficient literacy skills. BUMC is one of numerous hospitals around the country striving to become more proactive about assisting patients, with the goal of both improving hospital treatment and reducing the frequency of unnecessary readmissions and emergency department visits.
They're implementing a litany of strategies, from stripping medical jargon out of brochures and consent forms to revamping hospital signs.
They're also teaching clinicians to become "bilingual," as Rima Rudd describes it. Ideally, every hospital staffer should "be able to speak the language of their trade and the language of everyday talk — how they would speak to their favorite Uncle Dan," says Rudd, principal investigator of health literacy studies at Harvard School of Public Health.
The patient care stakes are significant, according to a review article published in July in the Annals of Internal Medicine, the latest in an accumulating stack of studies showing links between health literacy and an individual's health. The review, which looked at nearly 100 studies, found moderate to strong evidence that poor literacy skills can result in difficulties with taking medications properly, as well as a higher risk of poorer health or even death in elderly patients. Patients with lower health literacy also were more likely to use the emergency room or to become hospitalized.
Some of those turnstile hospital visits will soon become more costly. Beginning in fiscal year 2013, Medicare will adjust reimbursement for readmissions related to several diagnoses, including heart failure, depending upon how a hospital's rate compares with the anticipated readmission rate. Moreover, Joint Commission officials have stepped up their interest in patient communication, piloting new and updated standards. Those standards, which involve verbal and written communication, may influence accreditation decisions as soon as next year.
"I don't think the issue now is convincing anybody that [improving] health literacy is a good idea," says Elyse Barbell, executive director of the Literary Assistance Center, a New York City-based nonprofit group that's worked with some 20 hospitals over the last five years. "I think the problem now is: What are you going to do about it and how are you going to pay for it?"
Defining Hospital Literacy
Health literacy describes the "degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions," according to an influential Institute of Medicine report published in 2004. Federal officials have listed boosting health literacy as one of their two dozen objectives in Healthy People 2020, and numerous organizations have developed resources.
But hospitals vary considerably in their approach. Iowa Health System, frequently cited as a literacy leader, has tackled various aspects of patient communication and literacy dating to 2003 across the nonprofit system. One of its recent efforts has been to boost literacy and sensitivity training not just among clinicians, but among all hospital staffers.
Someone working a transportation job, for example, might hear a patient who is confused about medical instructions and could alert a nurse, says Mary Ann Abrams, M.D., who leads the system's Health Literacy Collaborative. "Also, people may feel more comfortable asking or talking to somebody who is not as formal as a doctor or a nurse," she says.
Other hospitals are focusing on one or two issues. Twin Rivers Regional Medical Center, a 116-bed rural hospital in Kennett, Mo., launched an initiative to help patients better understand medical instructions as they're sent home.
Along with rewriting discharge materials in plainer language, patients will be given a small device on which key instructions will be recorded pertinent to their diagnosis, says Steve Pu, D.O., a surgeon and medical director at Twin Rivers, which is owned by for-profit Health Management Associates, Naples, Fla. "I think any sort of reinforcement you can give to patients, the better," Pu says.
A New Perspective
To gain some backdoor insights, a good start would be to ask a couple of hospital employees to navigate their own facility starting at an unfamiliar entrance, Rudd says.
A short walk could be quite eye-opening. The maps may be glossy and color coded, but that doesn't mean those words and colors correspond to the signs on the walls. Also, look for medical jargon. "The poor patient with kidney disease — why does that patient have to learn the word nephrology?" she asks.
Neither are physicians particularly adept at sizing up a patient's literacy savvy, particularly with minority patients, according to a 2007 study in Patient Education and Counseling. The primary care doctors involved overestimated the health literacy level for 11 percent of white non-Hispanic patients, 54 percent of African-Americans and 36 percent of all other racial and ethnic groups combined.
But doctors are not the only hospital staffers who might benefit from a plain-speaking intervention, Rudd says. Hospital patients or visitors are more likely to ask for help from people who look like them, perhaps an aide or someone pushing a broom rather than to "disturb" the clinician wearing a white coat, she says.
The problem is that those staffers might also spout medical jargon, which they've unconsciously absorbed as the prestige language of the facility. "So it's catching," she says. "We have to stop that one way or the other."
To help gauge patient understanding, hospital clinicians employ a variety of tools, such as "teach back," in which the patients are asked to explain what they've just heard in their own words. Another common approach: "Ask Me 3," which was developed by the National Patient Safety Foundation.
At Coney Island Hospital in Brooklyn, N.Y., doctors and nurses are encouraged to wear "Ask Me 3" buttons, as well as to pass out related brochures and educate patients about the importance of getting those questions answered, says Young Lee, director of training and development at the 371-bed hospital. The three questions: What is my main problem? What do I need to do? Why is it important for me to do this?
But advocates stress that patient comprehension relies on more than words — written or spoken. Patients aren't at their best emotionally or mentally, regardless of their baseline literacy level, when confined to a hospital bed.
At Coney Island, the most common languages are English, Russian and Spanish. Clinicians now routinely ask two questions early on, Young says. What would you prefer to be called? (The nurses previously had been using "honey" and "sweetie" too liberally.) And, how would you prefer the bed to be positioned? Along with addressing comfort, that question opens the door for more optimal bed positioning for people from cultures in which feng shui carries spiritual significance, Lee says. "Health literacy and building comfort in the patient are inseparable."
A huge part of a clinician's job is to dig for the hidden anxieties, to listen for the unexpressed questions, Paasche-Orlow says. At Project RED, discharge advocates are trained to use compassionate words when talking with patients. It also, he says, "should be a warning sign to clinicians if they have not heard a question."
Nonverbal clues also can be highly influential in steering patient understanding, Paasche-Orlow says, giving statistical complexities as one example. "Whenever any doctor says anything about numbers, I am more and more convinced that what the patient understands from the communication is simply from the [doctor's] affect."
To be most effective, hospitals should designate an internal champion, whether someone in human resources, an interested nurse or someone hired for the literacy effort, says Barbell, of the Literacy Assistance Center. The champion should delve into his or her own data to determine one of the biggest concerns, one that can be measured over time, such as readmissions following outpatient surgery.
"I would start with where the hospital can get the greatest bang for the buck in terms of getting leverage," she says.
At North Shore–Long Island Jewish Health System, which includes 15 hospitals in the New York City area, four have been selected to conduct a hospitalwide assessment of their respective communication climates, including health literacy, says Terri Ann Parnell, associate chief diversity and inclusion officer at the nonprofit system. Once the data and related problems are identified, related projects will be launched.
Some literacy efforts can carry a significant price tag if numerous signs and written materials have to be updated. But to date, any cost savings data related to health literacy efforts are limited and mixed, according to the Annals of Internal Medicine review of nearly 100 studies.
At Coney Island Hospital, Lee says it would be difficult to assess the benefits of the "Ask Me 3" initiative without running a control group of people who didn't get the questions, an inherently costly exercise. Abrams also couldn't cite any cost-benefit analyses at Iowa Health System, although other outcomes have been measured.
In one study, published this year in the Journal of Patient Safety, Iowa Health System patients were surveyed about a new surgical consent form process that involved more verbal interaction, including teach-back techniques. Patients reported that they felt more comfortable asking questions about their upcoming surgery.
Moving forward, Medicare's focus on readmissions might convince fence sitters that literacy efforts can't be limited to a few brochures.
Project RED, funded by several federal agencies and replicated elsewhere, already has demonstrated benefits. The likelihood of patients returning to the hospital within 30 days — either to the emergency department or via readmission — decreased by about 30 percent, according to findings from a study published in 2009 in the Annals of Internal Medicine.
Literacy efforts are but one contributor. Still, hospitals can't afford to ignore the potential cost and other ripple effects of too many confounded patients, says Pu of Twin Rivers Regional Medical Center. "When you look at the cost-benefit analysis, if, by doing this, you could reduce your readmission rates by 2 or 3 percent, that makes it all worthwhile," he says. Stacked up against some up-front printing and training costs, he says, that's a notable payoff.
Charlotte Huff is a medical writer in Fort Worth, Texas.
'All I Wanted to Know: Is Mom Still Alive?'
By Bill Santamour
Jamie's mother was well into her 70s when she was first diagnosed with a serious heart condition that sent her to the hospital. Prior to that, both mother and daughter had enjoyed amazingly robust health that required little more than routine doctor visits over the years.
"We were novices when it came to hospitals," Jamie recalls. "I was nearly 50, but I really knew nothing at all. I mean, I knew what doctors and nurses were, but that was about it." When a woman in a flowered smock introduced herself as an "R.N.," Jamie had to ask what that meant.
"They took it for granted that we knew the lingo," she says. "Here I was already a nervous wreck over my mother, and every time anybody said anything to me it seemed to be in code, with initials and abbreviations and acronyms." Information about things like her mother's heart rate or blood pressure was delivered strictly by the numbers, with little context. "I didn't know what X over X meant, whether that was high, low or normal."
Unlike many patients and their family members, Jamie was not meek. When she didn't understand what she was being told, she made the clinician stop and explain it in a way she could grasp. The hospital staff was patient, allowing her to ask all the questions she needed to. But really, she says, they all came down to the same question: What does that mean?
"I know they were in a hurry. Wouldn't it have saved time if they'd just said it in plain English from the beginning?"
After Jamie reluctantly left her mother in the hospital and went home, communication with the clinicians remained frustrating. Whenever her cell phone rang and caller ID showed it was the hospital, she'd start to panic. "But the person calling would begin haltingly by asking, 'Is this, um …?'," Jamie says. "I could hear her shuffling papers to try to find the right form. She'd finally say my name, I'd confirm it was me, and she'd continue, 'I'm calling about, um …' and I could hear the papers being shuffled again while she tried to find my mother's name."
"The whole time, all I wanted to know was: Is Mom still alive?"
Jamie assured me that overall the hospital staff did a wonderful job of treating her mother and that she has nothing but gratitude for their skill, hard work and obvious commitment to care. I told her that a number of health care groups and individual hospitals are encouraging clinicians to adopt a more patient-centered approach to communication by, among other things, being better prepared before meetings and phone calls with patients or family members and by jettisoning the jargon.
"Well, good," she replied, pleased if a little skeptical. "Because you really shouldn't need a medical degree to have a reasonable conversation with people who work in the hospital."
—This article first appeared March, 8, 2011, in H&HN Daily.
A Literacy Library
» AHRQ Health Literacy Universal Precautions Toolkit | The Agency for Healthcare Research and Quality provides this step-by-step guidance www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/index.html
» The Health Literacy Environment Activity Packet | Want to survey the literacy sensitivity of your own hospital? These exercises provide a starting point | www.ahrq.gov/policymakers/case-studies/201408.html
» National Action Plan to Improve Health Literacy | Developed by the U.S. Department of Health & Human Services, it provides an overview of research and related goals | /ext/resources/inc-hhn/pdfs/resources/Health_Literacy_Action_Plan.pdf
» Project RED Toolkit | A toolkit for interested hospitals | http://bit.ly/oKI2aD