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Health Literacy: What You Don’t Know Could Hurt You

By Lisa Perry-Gilkes, MD, FACS


To some of our patients, the above headline is how our documents are perceived. Unscrambled, it reads: What you don’t know could hurt you.

In keeping with the best practices to improve patient care, we need to take into consideration our patients’ ability to understand their treatment plan to be able to implement it.

Definition & Demographics
In 2004, the Institute of Medicine defined health literacy as “the ability to obtain, process and understand basic health information and services needed to make appropriate health decisions and follows instructions for treatment.”

However, a third of American adults (89 million) today lack sufficient health literacy to carry out medical treatment and preventive healthcare. Economic consequence is estimated to be $50 billion to $73 billion annually.

The Bureau of Labor Statistics reports that 1 in 6 Georgia citizens between the ages of 19 and 65 have a low literacy rate. This cost the state of Georgia $1.26 billion dollars annually in social services and lost tax revenue per the Literacy For All study of 2017.

The National Assessment of Adult Literacy (NAAL) study of 2003 found that in Georgia’s Atkinson County, 36 percent of its population lacked basic prose literacy, the highest in the state. Fayette and Forsyth counties had the lowest, at 8 percent.

Results of the NAAL study are reported in terms of the four literacy performance levels—Below Basic, Basic, Intermediate, and Proficient—with examples of the types of health literacy tasks that adults at each level may be able to perform. At-risk populations are patients who scored below basic. These groups are as follows with their percentage.

• Adults 65yrs and older (59 percent)
• People with less than or some high school education (76 percent)
• Hispanic (all groups) (66 percent)
• African American (58 percent)
• Medicaid patients (60 percent)
• Medicare patients (57 percent)

Years in school may not always indicate the level of health literacy. The NAAL study shows that 39 percent of people with a high school education had only basic reading skills, and 13 percent had skills below average.
But an unexpected population of people with a low health literacy are our educated seniors. A 2002 Gerontology study found that 30 percent of affluent individuals in geriatric retirement communities scored poorly in health literacy. A 2002 Fortune article covered the story of several billionaire executives who also had limited general literacy skills. What both groups had in common was highly developed coping mechanisms.

“Literacy is one of the strongest predictors of health status. In fact, all of the studies that investigated the issue report that literacy is a stronger predictor of an individual’s health status than income, employment status, education level, and racial or ethnic group,” according to Karen Weis essay on Community Based Education. (Karen Weis, 2009, p. 13)

Lack of health literacy leads to ineffective execution of medical treatment and preventive care. Studies have shown that the majority of low literacy patients with pulmonary disease can not properly demonstrate how to use their inhalers, and more than half of patients with diabetes and low literacy knew the symptoms of hypoglycemia.

Common words that patients with limited literacy may not understand include:
• Blood in the stool
• Bowel
• Polyp
• Colon
• Lesion
• Rectum
• Screening
• Lesion

Literacy and the Law
Safeguarding a clear and understandable plan of treatment is the priority of patient health care. This also significantly impacts quality of care, treatment outcome, patient safety and satisfaction.

Communication is essential for effective healthcare. It is one of a physician’s most powerful tools. However, there can be a mismatch between communication and comprehension.

The Joint Commission and The National Committee for Quality Assurance have adopted guidelines specifying the need for comprehensible patient education information and consent documentation to be written in a way that patients can understand. Our legal system recognizes the patient-physician relationship as a fiduciary relationship, which is the highest standard of duty implied by law.

Poor communication between doctor and patient accounts for 75 percent of lawsuits, according to a study printed in Archives of Internal Medicine. Courts consistently held that physicians have a duty to fully disclose the risks and benefits of medical intervention and procedures in good faith and terms that the patient can understand.
Lawsuits stem from inadequate explanation of diagnoses and treatment. When patients feel ignored, doctors fail to understand the perspective of the patients or family members. The patient may feel rushed or feel they or their family members’ views are devalued.

The Social Impact of Limited Health Literacy
Patients with limited health literacy may not be easily identified. These patients carry a significant burden, and for some of them a sense of shame as well. They live a dual life to try and hide their limitations. Their limited reading ability is kept a secret.
• 85 percent never told their co-works
• 75 percent never told their healthcare providers
• 68 percent never told their spouses
• 62 percent never told their friends
• 52 percent never told their children

How Best Practices Get Best Outcomes
Setting the tone in your office involves all personnel. Physician and staff need to be sensitive of nonverbal clues that the patients exhibit. Patients with limited literacy skills are more comfortable with short words and sentences. They do better with personal contact as opposed to electronic communication. Visual clues are important in understanding directions.

There are certain behaviors and responses that may give you and your staff a clue. They are as follows:

• Incomplete or inaccurate registration forms
• Frequently missed appointments
• Noncompliance with medications
• Lack of follow through with labs, referrals, imaging tests
• Patients says they are taking medications, but labs or physical findings don’t agree

Responses to written information
• “I forgot my glasses. I’ll read it when I get home.”
• “I forgot my glasses. Can you read it for me?”
• “Let me bring this home so I can discuss it with my family.”

Responses to medication regimes
• Unable to name medications
• Unable to explain what medications are for
• Unable to explain timing of medication doses

How Improving Practices Leads to Best Outcomes

The First Visit/Scheduling & Registration. Sensitivity starts at the time of scheduling the appointment. Human interaction across the phone are better than automated services. Information collected should consist solely of what is needed to process the appointment. Preferably the receptionist should be able to speak in the patient’s native tongue. First-time patients will need directions to the office.
Currently, patient portals provide a plethora of information transmitted electronically, but don’t assume that patients have access to high-speed internet. Sixteen percent of Georgians – 638,000 households – do not have access to high-speed internet.

The first visit can be stress-free by asking the patient to make a list of questions to ask the doctor and to bring all medications including vitamins. Remind them that they are welcome to bring someone with them to assist in making them more comfortable.

At time of check in, all new patients should be offered assistance with completing the new patient registration form. Health information questionnaires may be particularly challenging. Indications of difficulty include an inordinate amount of time to complete forms and protest that questions are too “personal.”

To prevent these slowdowns with the registration process, be sure forms are user friendly and collect only essential information. When possible, forms should be in the patient’s preferred language. There are many online translation services and apps.

According to, “All providers who receive federal funds from HHS for the provision of Medicaid/CHIP services are obligated to make language services available to those with Limited English Proficiency (LEP) under Title VI of the Civil Rights Act and Section 504 of the Rehab Act of 1973. Interpreters are not Medicaid qualified providers; however their services may be reimbursed when billed by a qualified provider rendering a Medicaid covered service. Interpreters may not be paid separately. As of February 2009, oral interpreter services can be claimed using billing code T-1013 code along with the CPT Code used for the regular medical encounter.” Reimbursement varies from state to state. This is a timed code which is billed in 15 minute increments.

Meet the Doctor/Communication. Lack of understanding causes medication errors, missed appointments, adverse medical outcome and even malpractice lawsuits. Yet there are simple steps to improve your communication with your patients.

By simply slowing down your conversation, comprehension will improve. Sit down even if it is for a brief period toward the end of the visit. This helps to build a patient- centered visit and improve the clinician-patient relationship. A 1997 JAMA study showed that by simply increasing the average encounter time from 15 minutes to 18 minutes, it signi cantly decreased the incidence of malpractice suits.

Start your visit with an orienting statement: “First I will ask you some questions, and then I will examine you.” At closing, ask if they have concerns that were not addressed.

Use non-medical verbiage. Language we use in average conversation may be foreign to our patients.

Common language alternatives to medical terms
• Analgesic: Pain killer
• Anti-inflammatory: Lessens swelling and irritation
• Benign: Not cancer
• Carcinoma: Cancer
• Cardiac problem: Heart problem
• Cellulitis: Skin infection
• Contraception: Birth control
• Enlarge: Get bigger
• Heart failure: Heart isn’t pumping well
• Hypertension: High blood pressure
• Infertility: Can’t get pregnant
• Lateral: Outside
• Lipids: Fats in the blood
• Menopause: Change of life, stopping periods
• Menses: Period
• Monitor: Keep track of, keep an eye on
• Oral: By mouth
• Osteoporosis: Soft breakable bones
• Referral: Send you to another doctor
• Terminal: Going to die
• Toxic: Poison

“The Brown Bag Medication Review”

Evaluating your patient at their first follow up appointment allows you to see if they understood the directions for medications that were given at their first appointment. At the visit, ask the patient to name each medication and explain what it is for and how it is taken. As the patient responds, note whether or not they identify the medications by reading the label, or do they look at the pills to identify them. Ask the patient to name each medication, explain what they are for and how they are taken. Inquire when the last two times they took the medication was.

It’s been said that a picture is worth 1,000 words. Visual aids such as pictures, models and take-home brochures aid in communication. These documents need to be simple. To many in-depth images may be confusing. Simply drawn pictures without clutter are best to send home with the patient. Drawing your own images can help you customize your treatment plan.

Limit the amount of information given at one sitting. This by no means suggests that you should withhold important medical information. After reviewing the treatment plan, it should be repeated at check out by staff and/or with handouts.

An effective method to assure patient comprehension is the simple “teach-back” technique.
1. Do not ask the patient, “Do you understand?”
2. Instead, ask patient to explain or demonstrate how they
will follow the recommendations and treatment plan.
3. If the patient cannot do this to your satisfaction, assume that you have not supplied adequate teaching. Repeat your directions using simpler terms or explain the treatment plan to a competent family member  or companion.

As reported in Archives of Internal Medicine (2003), the teach back technique is effective in improving patient understanding and outcomes.

Finally, creating a comfortable shame-free environment in your office goes miles. Patients should feel free to ask questions about anything they don’t understand. The Partnership for Clear Health Communication, which consists of the AMA and a consortium of professional organizations, developed “Ask- Me-3” questions the patient can use as a framework to participate in conversation with their physician. These consist of:
• What is my main problem?
• What do I need to do about the problem?
• Why is it important that I do that?

If at the end of the visit the patient can answer these questions, you can document that they have a good understanding of the agreed-upon treatment plan.

Written materials should be no higher than a 6th grade level. For some practices with patients at high risk of illiteracy, a 3rd-5th grade reading level may be more appropriate. Short words and short sentences are easier to comprehend.

Many healthcare professionals find it difficult to form text at this basic literacy level. However Microsoft Word has a grammar checking tool that uses the Flesch-Kincaid grade level formula, which can be helpful in creating documents that are more appropriate for this patient group.

Format can also be con gured to make understanding documents easier to comprehend. Densely written material and small fonts make documents harder to understand. Using all capital letters also makes it more difficult to comprehend the document.

Health literacy has a significant impact on treatment outcomes. It is imperative that we as physicians keep this in mind while caring for our patients. As pay-for-performance continues to be adopted, outcomes will have an increasing impact on our earnings. These outcomes can be easily improved by addressing health literacy.

Simply stated, patience, tolerance, awareness and the true desire to give better healthcare in a caring environment is all that is needed.


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