How An Adult With Low Literacy Experiences the Healthcare System according to Peter Morrison

The term “health literacy” has been around for at least 15 years but headway in understanding it and implementing tools to address it is relatively recent.  Low health literacy occurs in those who are extremely well-educated as well as those who have low literacy.

If you are entering the US healthcare system with low health literacy, you will have trouble.  But your troubles increase exponentially when you also have low literacy.  That’s why Peter Morrison collaborates with people with low literacy to create health literacy interventions.

Since 2009, Morrison has been Director of Health Literacy Programming at the Literacy Coalition of Central Texas.  There he works with English Language Learners and those with low literacy, as well as national leaders to develop a suite of health literacy services with proven efficacy throughout the state of Texas.

Asked to explain how a person with low literacy experiences the healthcare system, Morrison gives his audience a reading test.

“First, kcehc the egral and rewol rotaidar sesoh along with the rellams retemaid sesoh, hcihw run morf the engine eht llawerif.  Inspect hcae esoh along its eritne length, and ecalper any esoh that is dekcarc, nellows, or swohs signs of noitaroireted.  If you ezeeuqs the esoh, skcarc may emoceb erom apparent. Make sure the esoh snoitcennoc are tight.”

“Anyone want to take a stab at what this passage is about?” he asks.

Very few of his audience respond.  And he is not surprised.  “Most of you probably couldn’t answer the question. Some of you probably got frustrated. Some of you didn’t really even try to read it.   This is how it feels to be low literate. Even if you broke the code (words spelled backwards) you likely couldn’t answer questions about it.”

He describes the experience further, “When we’re concentrating on individual words, we can’t comprehend sentences and paragraphs. Imagine an informed consent document, “I hereby authorize…blah blah blah.” You’ve lost the low lit person already.  They’re stuck on the words “hereby” and “authorize,” so when they complete the sentence, they haven’t gained comprehension.”

Patients with low health literacy often try to disguise or hide their struggles by saying things like “I forgot my glasses, I will read it later.”  These are red flags or cues for health care providers, Morrison notes.  “One of the biggest barriers faced by low Health Literacy patients is shame of not understanding.  This inhibits question asking and promotes head nodding.”

Texas’ large Hispanic/Latino population shapes his work.   “Culture plays a big role with English Language Learning patients, but often feelings of shame for not understanding are the same.”  He does advise healthcare providers to “be careful assuming translation is enough. People don’t understand “medicalese “in English and patients don’t understand it in other languages either.”

Morrison’s  leadership in the field of health literacy is evident in several instances, including a collaboration request by Joint Commission on a nation-wide hospital assessment project.  Research validation is part of the success of health literacy interventions he has developed.  He does pre- and post- evaluations of workshops, measuring increased knowledge and intent to change behavior. “For instance, a mobile dental van wants their consent form redone. They send forms home to parents of school kids. We’ll look at return rate of consent forms and completion rate of those returned forms.”

Indeed, his expertise has been recognized and rewarded by being selected as one of ten nation-wide American Medical Association consultants for the Communication Climate Assessment Toolkit (CCAT).  His enthusiasm  for the Toolkit is obvious, “The C-CAT rules! It was developed by the American Medical Association and endorsed by the National Quality Forum. It measures 9 discreet domains of effective communication.  This instrument puts hard metrics behind the soft issue of communication. It helps agencies target Quality Improvement Interventions.”
As a strategy for health care providers, Morrison says that Teach-back is the most evidence-based practice in Health Literacy today.  But he warns that providers need to insist that patient’s not just repeat back but actually describe in their own words what they are to do, “how they will take medicines for example.”

According to Morrison, the biggest challenge that the US faces to become a health literate society is that society as a whole is not learning what he calls “medicalese.”

“We need a health system overhaul. Providers and the entire system need to transform care to empower the individual. And someone can’t be empowered when they don’t understand the content at hand. The average American reads at 8th grade level.  Average health information is written at 10th grade or higher. That’s an example of a system change that’s needed.”

Morrison is feeling positive that the movement to improve health literacy is gaining momentum. “I think we’re on the right track…policy is changing, people are starting to pay attention. “Three years ago I would go into a room and five percent knew about Health Literacy. Now fifty percent do! People are getting it.”

See the full transcript of the twitter chat with Peter Morrison at Health communication, Health literacy and Social Sciences Tweetchat.

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Women, Care-giving and Health Literacy

Health literacy is essential to care-giving in the 21st century. The term health literacy is confusing because we can be highly educated yet still have poor health literacy.  So what is health literacy?  It’s about understanding complex terminology.  It’s about conversational competence like the ability to listen effectively, articulate health concerns and explain symptoms accurately.  It’s also about evaluating, analyzing and deciding about one’s own care. It’s not just reading.

Health literacy is important for us as healthy women, but is it also critical for our family. As women, we are the caregivers in the family. According to a 2001 study, 80% of moms were responsible for choosing their children’s doctor, taking them to appointments and pursuing follow-up care. Moms were also responsible for making health insurance decisions and for caring of the extended family.

What happens when women are not health literate? We are less likely to receive preventative care, such as a mammogram or PAP smear. If we don’t seek important screening tests, we find diseases like breast or cervical cancer at later stages.  Indeed, women with low health literacy are more likely to have chronic conditions like high blood pressure, diabetes and asthma and have difficulty managing these conditions.

Women with limited health literacy often lack knowledge or have misinformation about their body. Without this knowledge, we may not understand how and why diet and physical activity are important in reducing the risk of certain illnesses and conditions. As the ones who take on much of the dietary responsibility of families, we need to know what is good for all of us and why.

If women are not health literate, we may also miss important information during critical health decision-making. In situations that are highly emotional, such as a diagnosis of cancer, it is difficult to recall and understand what has been said. Even under optimal circumstances, patients in these situations leave the physician’s office with only about 50% of the information that has been provided to them.

If one is not health literate, the situation may be more dire. In one study, 80% of breast cancer patients with low health literacy made final decisions about their therapy after only one visit with an oncologist. When researchers compared these patients’ expectations about their  chance of a cure to that of their oncologists, 60% of the women had overestimated their chance of a cure by 20% or more.  While overestimating one’s chance for a cure might not be a bad thing, not getting a second opinion could be disastrous.

A common complaint is that physicians do not explain illness and treatment options in easily understood terms. There is often a mismatch between a patient’s and physician’s expectations and understanding.  Again, studies detail patients’ misunderstanding of common medical terms. When patients were tested for their understanding of words found in transcripts of physician-patient interviews a large variation in understanding occurred. While 98 percent of patients understood the health term vomit, only about one-third understood the word orally, 18% understood malignant and just 13 % the word terminal.  In this same study, the physicians thought they were actually switching to everyday language when communicating with patients.

Unfortunately those with low health literacy are less likely to ask questions of their physician. This is tragic. The people who need more help actually receive less. What can you do to become more health literate? Read and learn about  your health condition. Talk to other women with similar conditions. Talk to your doctor, nurse and other healthcare professionals. While at the doctor’s office, you can try the simple technique called:

Ask Me 3.  The program encourages patients to understand the answers to three questions:

“1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?”

Taking these three questions with you during a doctor’s appointment, writing down the answers and making sure you understand everything that is said to you are ways to make a difference. If you think that the appointment will bring bad news, take a friend or family member with you. Don’t leave the physician’s office confused. You have the right to know what is happening to your body.

Low health literacy may lead to poorer health

I started a group on LinkedIn called Health Communication, Social Marketing and Social Scientists.  Recently there has been a long discussion over health literacy.
When discussion among health communicators over health literacy becomes a debate over individual responsibility versus social responsibility, you know there is a problem. Maybe it’s just that the United States hasn’t and won’t ever get beyond its Puritan roots. Or maybe there is a true misunderstanding of the terminology and the research. So let’s start with definitions.

Healthy People 2010 defines Health Literacy as: “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”

The term health literacy can be confusing because it is not just about reading.  In fact, it is about an extremely complicated skill set.  Conversational competence, that is,   the ability to listen effectively, articulate health concerns and explain symptoms accurately is part of health literacy.  Health literacy encompasses decision making and analytical abilities.  Tasks that are required of people using the healthcare system include evaluation, analysis and interpretation.  Locating information and being able to assess its quality is essential.  Being able to do mathematical calculations and to judge risk are also part of health literacy.

Therefore, people who are highly educated and functioning well in our society, people who are “reading literate” may be “health illiterate.”  What this means for our society has been illustrated in study after study.  A recent review of the literature confirms that those with poor health literacy are more likely to have poor health outcomes.  Poor health literacy is an economic drain on our society with studies focusing on chronic conditions such as asthma, diabetes, heart disease and cancer (Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, JAMA, Feb 10, 1999; Merriman, Betty, CA: A Cancer Journal for Physicians, May/June 2002; Schillinger, Dean, JAMA, July 24/31, 2002; Norton, A. Reuters Health, July 19, 2011).

Colleagues decrying individuals who choose to leave high school without graduating as the source of the health literacy problem in the United States are missing the point.  Colleagues who state that because there is so much free information “out there” it is the individual’s responsibility to understand it and use it effectively,  also do not understand what health literacy is.