An estimated 14 percent of Americans are "health-illiterate," and another 20 percent have only basic health literacy, according to the National Center for Education Statistics. "The average American reads at a 5th grade level, and the average health care information is written at a 10th grade level," says Aileen Kantor of Health Literacy Innovations, Bethesda, Md., which sells software that analyzes documents for comprehensibility and suggests changes to render them to an appropriate reading level. "If people can't understand their health care information, they're going to make mistakes."
In one study of caregivers for young children, almost half made dosing errors when they were given standard medication counseling, and fewer than 10 percent followed instructions to the letter. When they were instructed using plain language and pictograms, the dosing error rate plummeted to 5.4 percent, and almost 40 percent adhered to all the directions.
Kantor, whose company was founded specifically to address a growing interest in improving communication with patients, says health literacy has gone from a "cool thing" to a must-have, due to increased attention from regulators and liability concerns when patients don't understand their instructions.
As payers move to value-based purchasing, it will be even more important for providers to make sure patients understand exactly what they need to do.
Kantor says providers often aren't aware that their patients might have problems understanding the material they receive. "I use our software tool on information from the world's best clinics, and it's written at a college reading level," she says. "It's all medical jargon and long sentences."
The federal Plain Writing Act became law in 2010, requiring government agencies to use clear language for all new publications. The Affordable Care Act specifies that insurers must explain coverage in understandable terms, and the Department of Health and Human Services established a standard form earlier this year that insurers will be required to use to describe the benefits and costs of their plans.
More than half the states have health literacy initiatives of some sort, and several have adopted plain-language requirements for state agencies similar to the Plain Writing Act. In addition, the Joint Commission, an influential accreditation body, recently adopted a new standard that took effect at the beginning of July, specifying that "the hospital provides information in a manner tailored to the patient's age, language, and ability to understand."
And while it's not specifically spelled out, at least so far, attention to health literacy is implied in the requirements for meaningful use of electronic health records. "The highest level of meaningful use is involving the patient in shared decision-making, and you can't have that when you have an imbalance in communication," says Cynthia Baur, director of the National Action Plan to Improve Health Literacy, a federal initiative.
Baur suggests a few basic principles to help simplify and clarify information:
* Write in plain language from the beginning. "Sometimes people think they can take a document, hand it to a writer or editor, and say, 'Here, put this in plain language,' but then it has to be completely rewritten," Baur says.
* Confirm that your audiences have physical access to the technology and apps that you're intending to use. Not everyone has a smartphone or even a desktop PC for viewing videos, for example.
* Eliminate jargon. "Patients want to be agreeable because they need a clinician's help. Clinicians see their heads nodding, and they may assume a level of understanding that isn't there.," Baur says.
And it's not just patients who might not understand. "Even for clinicians, the same terminologies might not always translate across specialties."
* Clean up the display. "Even if you get rid of the jargon, it will impede the cognitive process if you present the information in a dense way that overloads people and gives them information that isn't relevant." Stick to the basics, choose readable fonts, and include a lot of white space so that the amount of information doesn't look intimidating.
With the regulatory and business pressures growing to communicate clearly to patients, following are examples of how several providers are tackling health literacy issues.
Plain Language in the EHR: Community Healthcare Network, New York, NY
This network of 11 clinics serves one of the most ethnically diverse populations in the country, with immigrants from every continent except Antarctica.
Health Literacy Program Manager Lisa Khan-Kapadia says she expects to be partnering closely with the information technology staff as she integrates plain-language patient education materials with the organization's eClinicalworks EHR.
"We're going into a future when a physician or a nurse does an order set and automatically gets patient education materials to print out along with the lab orders," she says. She's already going over order sets with her director of informatics to make sure she has appropriate materials available.
At the same time, the organization as a whole is adopting the principles of health literacy, and Khan-Kapadia expects that plain language will be a way of life within two or three years.
"At that point, we can start measuring whether we're communicating effectively with patients," she says.
"We should see better patient outcomes because we're doing a better job helping our patients take care of themselves."
The first year of the initiative was focused on print materials, and she is now applying the same principles to creating videos for clinic waiting rooms.
Beyond Brochures: Lehigh Valley Health Network, Allentown, Pa.
"When I started this job, we were a little department that handed out brochures," says Paula Robinson, patient, family and consumer education manager for Lehigh Valley Health Network's Division of Education. Her department has since become an integral part of developing any form of patient communication, including the little chats that clinicians have with patients.
