Translating the hieroglyphics of health care

That bottle of orange juice you're about to buy has 42 grams of sugar in it. What do 42 grams of sugar look like-is that a lot or a little?-and would that juice be good to drink if you're trying to lose weight or have diabetes? Your doctor says you have cancer, with a five-year survival rate of 67 percent without treatment. What do those numbers mean? What should you do? If you're shopping for a health care plan, should you choose an option that covers 60 percent of total health care costs and has a $5,000 deductible, or an option that covers 90 cent and has a $347 deductible? Do you even know what a deductible is?

The day-long Summer Seminar in Health Literacy, convening Aug. 6 at Providence Alaska Medical Center, will educate health care professionals and others in the community about health literacy, and provide strategies to help people who can't understand health care terms and issues affecting their lives.

Providence, the Alaska Native Medical Center and the Anchorage Health Literacy Collaborative-including representatives from UAA's Center for Human Development and Department of Health Sciences-are sponsoring the event, which features speakers Helen Osborne, president of Health Literacy Consulting, and Dr. Barry Weiss, affiliate professor of public health for UAA's Department of Health Sciences and tenured professor in the Department of Family and Community Medicine at the University of Arizona School of Medicine. Breakout sessions will focus on both clinical and community challenges in health literacy.

Providence and the Alaska Native Epidemiology Center have provided scholarships for employees to attend, and continuing education credits for physicians, nurses and social workers will be provided through coordination with the ANMC.

Weiss, a family practice doctor, has written a health literacy manual for clinicians and co-developed a screening test for health literacy. He first became engrossed in the topic after an experience he had years ago.

"I handed a mother a handout about a problem her child had," Weiss said. "She looked at me and told me, 'I can't read this.'"

Cutting the knots

Nearly nine out of 10 adults seeking medical help have trouble using health information readily available at health care facilities, retail stores, through the media and in communities, according to the U.S. Centers for Disease Control and Prevention.

These people have difficulty understanding what their doctor tells them about their condition, how to treat it, how much of a drug to take or how to navigate through the impenetrable thickets of jargon encasing most health care plans. Some can't read. Others struggle with the number-juggling of dosages, measurements, percentages and ratios. They might live in poverty, have a low level of education, speak English as a second or third language or come from a culture that's vastly different than the dominant mainstream American culture.

Many who feel challenged with health literacy are bright and capable, even quite brilliant and talented in their fields of expertise, but find they simply can't think through confusing pages of instructions and the tangles and knots of health care jargon.

"It's not the person's fault. It's our job as health care professionals to deliver that information in a way they can understand and use it," said Linda Shepard, a registered nurse with a master's in nursing and education. Shepard has 30 years of experience in hospitals, clinics, long-term care, home care and hospice, and now serves as community outreach coordinator at Providence Alaska Medical Center.

"It doesn't matter if you have a health background, there are certain points where we're at risk for not understanding health information," she said. "In a stressful situation, we're all at risk for it."

Shepard's awareness of health literacy issues first surfaced when she served as a home health nurse.

"I would visit my patients to admit them to our service and they would be completely overwhelmed," she said. "Oftentimes they were just home from the hospital and dealing with a new diagnosis or exacerbation of their current condition. The kitchen table was filled with information pamphlets, instructions and a pile of new medications."

Digging deeper

Shepard described a scenario she'd seen in a workbook at a health literacy conference, in which a health care professional told an insulin-dependent diabetic to inject an orange-a practice intended to give the person an idea of what it would be like to poke a needle into human skin.

"The person injected the insulin into the orange and ate the orange," Shepard said. "People don't understand what their medications are for, how they interact with each other. Many times I have seen where people end up in the ER or readmitted to the hospital because they did not understand their medications-what they were for, how to take them, what those medications might interact with. Their heart and water pills, they mix them up. Just getting the handout from the pharmacy? Who reads that? What people need is for someone to sit down with them and say, 'This pill makes the heart beat stronger. This is a water pill to help take fluid out.'"

Shepard has learned, in her time as a nurse, to watch carefully to be sure a patient is getting the message she's trying to give.

"There's so much nonverbal communication," she said. "it's not just asking someone 'Do you understand?' or 'Do you have questions,' because people will smile and nod. You have to dig a little deeper, ask them how they would use the information, what they'd tell their husband or daughter about it, make sure you actually see them do it. I always loved education, seeing the light go on, seeing the understanding in their eyes."

'It's not like you dumb it down'

Shepard has actively participated in the Anchorage Health Literacy Collaborative since its inception in 2007. Its partners have varied over time, and it's now co-chaired by Polly Smith, executive director of the Alaska Literacy Program, and Dr. Rhonda Johnson, Chair of the UAA Department of Health Sciences. UAA's graduate program in Public Health, CHD, School of Nursing, Department of Psychology and the dental hygiene program have all been active partners in the Collaborative, participating in health needs assessments, breast and cervical cancer screenings, peer language navigator training and outreach and development of a health fair for ALP's adult learners.

"Materials are revised every year to make it more useful," Shepard said of health fair handouts she has created. "I don't want to say that you make it more simple-it's not like you dumb it down-but you make it so it's culturally meaningful for that person or in a format they can understand."

Shepard joked that her greatest obstacle in educating other people has been herself.

"As a nurse with years of training, I can spout off all kinds of medical information, but what good is it if the people I am trying to help cannot use it, or understand it?" she said. "I've learned I must be very intentional about my communication, think about how each word, phrase will come across."

Teaching a group of immigrants and refugees about heart disease and high blood pressure posed a challenge.

"I had to be very careful about using words such as 'hypertension' and 'myocardial infarction,'" Shepard said. "I eventually just used a balloon filled with water to demonstrate how the increased pressure on the blood vessels might cause a problem."

Shepard and others active in the Collaborative help provide healthy lifestyle and disease prevention education to Peer Language Navigators-representatives from various cultural groups who have a high level of English proficiency. The PLNs attend the training and then interpret that education for people in the Hmong, Korean, Chinese, Somali and other communities in the Anchorage area.

Last year, the Collaborative received funding from the National Library of Medicine to train PLNs in accessing reliable health information online.

"The PLNs were able to reach more than 100 members of their communities," Shepard said. "This was so successful we were funded for a second project in 2014."

Sugar cubes have been one tool Shepard uses to give people a visual of how much sugar lurks in their favorite sodas and juices.

"So what if something has 64 grams of sugar in it?" she said. "But if they visually see it has this many sugar cubes in it, 16 or 17 sugar cubes in it, they're aghast. They had no idea there were so many sugar cubes in a bottle of soda. When they're able to see something, feel it, touch it or taste it, they're able to get the information and able to use it."

Want to learn more about health literacy? Check out Thad Woodard's recent Alaska Public Media interview with Dr. Barry D. Weiss and Dr. Rhonda Johnson.

Written by Tracy Kalytiak, UAA Office of University Advancement.