Do you know the difference between an angiogram and angioplasty? Can you breeze through medical questionnaires and confidently navigate patient portals? Are you sure the insurance coverage you’re choosing has the best deductible, premiums and copays — and do you understand what those terms really mean? When your sick child needs medicine in the middle of the night, are you certain you’re giving the right dosage?
It’s impossible for anyone to know everything they need to know about health and health care. That’s where health literacy comes in. Health literacy isn’t just about being able to fill out hospital forms or comprehend medical jargon. For patients, health literacy encompasses knowing what you don’t know, feeling confident asking questions and knowing whom to ask. Health literacy skills help patients navigate a complex health care system and get the best results from their care.
On their end, doctors, nurses and pharmacists can do a lot to make themselves clearer. Using plain language to describe a disease process or explain a medical procedure helps. Showing parents or patients how to measure a medication helps. Providing reader-friendly pamphlets and educational material helps. Letting patients know whom to call when they have questions at home helps, too.
How Is Your Health Literacy?
Health literacy involves a range of abilities, skills and knowledge, including the following:
— Navigating the health care system (includes filling out forms, finding appropriate providers and services).
— Describing symptoms and sharing personal health information with providers.
— Having health knowledge: how the body works, types of disease and disease causes.
— Making connections between lifestyle (smoking, drinking, diet and exercise) and health.
— Weighing risks and benefits of medical tests, procedures and treatments.
— Managing chronic conditions and keeping up with self-care.
— Numeracy: understanding and being able to work with numbers.
Power of Plain Language
Terry Davis, a professor of medicine and pediatrics at the Feist-Weiller Cancer Center at Louisiana State University Health Sciences Center in Shreveport, is a pioneer in the field of health literacy.
Health literacy itself “is sort of a jargon-y term,” Davis says. “It’s the ability to obtain information, understand it and use it in a way that can help you make health decisions that fit for you. It’s about using health information and services. The problem is nine of 10 adults can’t clearly understand materials that are commonly used in health systems and the media now.”
How information is relayed to patients — not necessarily comprehension ability — plays a major role in health literacy gaps. “We realized it’s really our problem — that we need to make it easier for people to understand the health information and use the system,” Davis says. “We need to make it user-friendly.”
Patients and families need to know where to turn for answers, says Lindsay Mayberry, an assistant professor in the division of general medicine and public health at Vanderbilt University Medical Center. “A lot of times, the problem with the system is there’s no accountability about: Who do I call? Who’s going to answer the phone at 8 o’clock at night when I’m trying to take care of my child, or my elderly parent or myself?”
Understanding and being able to work with numbers is closely related to health literacy. “If you think literacy is a problem, numeracy is even more so,” Davis says. “A lot of taking medicine, particularly in pediatrics, is like math word problems.”
Medication labels “should be to the point and pretty clear,” Davis says. However, in research she’s conducted, that hasn’t always been the case. “People got really confused,” she says. “‘Take two pills twice a day.’ Well, is that two pills or is that four pills?”
Numeracy skills are necessary in scenarios like these:
— Measuring medications and taking correct doses.
— Tracking blood sugar levels, cholesterol levels and other health outcomes.
— Understanding nutrition labels.
Health providers can use a technique called “teach-back” in which patients relay back the instructions a provider gives, to confirm their understanding.
Visual aids can help. “If you show illustrations and they’re not too complex or too anatomical, that helps people understand what you’re talking about,” Davis says. When it comes to doses, “Instead of talking about 4 ccs or half a cup or 3 tablespoons or whatever — just show it. And then you’ve got it. ”
Health Insurance Literacy
Along with plenty of patience and persistence, choosing insurance plans requires a combination of health literacy and numeracy skills.
Comparing plan details requires you to understand insurance terminology and have the ability to crunch the numbers. Anyone, no matter how intelligent or highly educated, can get tangled in the weeds of prescription drug coverage and Medicare and Medicaid benefits.
People with lower health insurance literacy may be more likely to avoid health care services, including preventive care services that are exempt from out-of-pocket payments under the Affordable Care Act, according to a JAMA Network study published Nov. 16. Cholesterol level checks, flu shots, colon cancer screening and mammograms were among preventive services listed on the online survey completed by more than 500 adults. Participants with lower health insurance literacy were more likely to delay or forgo preventive care because of cost concerns,
Determining Health Literacy
Unfortunately, low health literacy can lead to worse health outcomes. In a study of about 3,000 hospital patients treated for serious heart conditions — acute coronary syndrome, heart failure or both — those with lower health literacy were more likely to die within a year of being discharged. Participants with lower health literacy were more likely to have co-existing health complications and to have had other, recent hospitalizations, in the study published in the December issue of Mayo Clinic Proceedings.
Health literacy is multifaceted and challenging to measure, says Mayberry, the lead study author.
Reading comprehension, familiarity with medical jargon, and participants’ perceptions of whether they had trouble understanding health information and how much help they needed filling out medical forms were some of factors the researchers assessed.
Level of education was another factor. “Educational attainment is really closely linked to health literacy level,” Mayberry says. As other research has also shown, socioeconomic status was associated with mortality rates in the study.
Anyone can leave a doctor’s office feeling overloaded with information given too quickly to take it all in with perfect recall, Mayberry notes. “If you can go home and fill those gaps — if you know how to seek the right information; if you know how to get in touch with your doctor’s office to ask those questions, or if you know reliable sources that you can go to to understand questions you might have about your health — that all indicates health literacy,” she says. It’s about being able to use and access information.
On the other hand, Mayberry says, “If you leave your doctor’s visit and you’re confused and you don’t really know where to go with that — you feel an inability to make sense of it — that can indicate some deficits in health literacy.”
For people with lower health literacy — or anyone receiving a new diagnosis and learning about treatment options — having a family member or friend accompany you to the doctor’s office can be extemely helpful. This ‘ patient wingman‘ can ask questions and take notes, helping to reduce stress on you as the patient.
Bridging the Gap
Vanderbilt University Medical Center recently put a health literacy screening initiative in place for all inpatients, Mayberry notes. The hope is that screening can help link patients to better support services upon leaving. For instance, a patient with a heart condition who has lower health literacy might need more encouragement and support, such as transportation assistance, to attend a cardiac rehab program. Cardiac rehab has been shown to improve patients’ recoveries by increasing their physical activity and promoting other healthy behaviors.
Public health agencies and health care systems are increasingly taking proactive steps to bridge health literacy gaps. The Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality and other organizations offer resources such as health literacy toolkits, cross-cultural tools and teach-back interventions.
Family members can do a great deal to level the playing field for people with lower health literacy, Mayberry says: “If you have a loved one that you know sometimes struggles with a lot of information about their health, having sort of a translator role, and maybe asking for access to their electronic record through patient portals (can) help patients still successfully navigate the health care system.”
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