59 Health Literacy

What is Health Literacy?

In the report, Healthy People 2010, the U.S. Department of Health and Human Services included improved consumer health literacy and identified health literacy as an important component of health communication, medical product safety, and oral health. Health literacy is defined in Health People 2010 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.”

Health literacy includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor’s directions and consent forms, and the ability to negotiate complex health care systems. Health literacy is not simply the ability to read. It requires a complex group of reading, listening, analytical, and decision-making skills, and the ability to apply these skills to health situations.

Health literacy varies by context and setting and is not necessarily related to years of education or general reading ability. A person who functions adequately at home or work may have marginal or inadequate literacy in a health care environment. With the move towards a more “consumer-centric” health care system as part of an overall effort to improve the quality of health care and to reduce health care costs, individuals need to take an even more active role in health care related decisions. To accomplish this people need strong health information skills.

Skills Needed for Health Literacy

Patients are often faced with complex information and treatment decisions. Some of the specific tasks patients are required to carry out may include:

• evaluating information for credibility and quality,
• analyzing relative risks and benefits,
• calculating dosages,
• interpreting test results, or
• locating health information.

In order to accomplish these tasks, individuals may need to be:

• visually literate (able to understand graphs or other visual information),
• computer literate (able to operate a computer),
• information literate (able to obtain and apply relevant information), and
• numerically or computationally literate (able to calculate or reason numerically).

Oral language skills are important as well. Patients need to articulate their health concerns and describe their symptoms accurately. They need to ask pertinent questions, and they need to understand spoken medical advice or treatment directions. In an age of shared responsibility between physician and patient for health care, patients need strong decision-making skills. With the development of the Internet as a source of health information, health literacy may also include the ability to search the Internet and evaluate websites.

According to the American Medical Association, poor health literacy is “a stronger predictor of a person’s health than age, income, employment status, education level, and race.” In Health Literacy: A Prescription to End Confusion, the Institute of Medicine reports that ninety million people in the United States, nearly half the population, have difficulty understanding and using health information. As a result, patients often take medicines on erratic schedules, miss follow-up appointments, and do not understand instructions like “take on an empty stomach.”

Vulnerable populations include:

• Elderly (age 65+)—Two thirds of U.S. adults age 60 and over have inadequate or marginal literacy skills, and 81% of patients age 60 and older at a public hospital could not read or understand basic materials such as prescription labels
• Minority populations
• Immigrant populations
• Low income—Approximately half of Medicare/Medicaid recipients read below the fifth-grade level
• People with chronic mental and/or physical health conditions

Reasons for limited literacy skills include:

• Lack of educational opportunity—people with a high school education or lower
• Learning disabilities
• Cognitive declines in older adults
• Use it or lose it—Reading abilities are typically three to five grade levels below the last year of school completed. Therefore, people with a high school diploma, typically read at a seventh or eighth grade reading level.

The relationship between literacy and health is complex. Literacy impacts health knowledge, health status, and access to health services. Health status is influenced by several related socioeconomic factors. Literacy impacts income level, occupation, education, housing, and access to medical care. The poor and illiterate are more likely to work under hazardous conditions or be exposed to environmental toxins.

Economic Impact of Low Health Literacy

In addition to the effects of low health literacy on the individual patient, there are economic consequences of low health literacy to society. After adjusting for health status, education level, socioeconomic status, and other demographics factors, people with low functional literacy have less ability to care for chronic conditions and use more health care services.

Why Does Health Literacy Matter?

Every day, people confront situations that involve life-changing decisions about their health. These decisions are made in places such as grocery and drug stores, workplaces, playgrounds, doctors’ offices, clinics and hospitals, and around the kitchen table. Obtaining, communicating, processing, and understanding health information and services are essential steps in making appropriate health decisions; however, research indicates that today’s health information is presented in ways that are not usable by most adults. “Limited health literacy” occurs when people can’t find and use the health information and services they need.

• Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in our healthcare facilities, retail outlets, media and communities.
• Without clear information and an understanding of the information’s importance, people are more likely to skip necessary medical tests, end up in the emergency room more often, and have a harder time managing chronic diseases like diabetes or high blood pressure.

What Needs to Be Done to Improve Health Literacy?

We can do much better in designing and presenting health information and services that people can use effectively. We can build our own health literacy skills and help others—community members, health professionals, and anyone else who communicates about health—build their skills too. Every organization involved in health information and services needs its own health literacy plan to improve its organizational practices. The resources on this site will help you learn about health literacy issues, develop skills, create an action plan, and apply what you learn to create health information and services that truly make a positive difference in people’s lives.

Who Does Limited Health Literacy Affect? Who is affected? Key Stakeholders

People of all ages, races, incomes, and education levels can find it difficult to obtain, communicate, process and understand health information and services. Literacy skills are only a part of health literacy. Even people with strong reading and writing skills can face health literacy challenges when –

• They are not familiar with medical terms or how their bodies work.
• They have to interpret or calculate numbers or risks that could have immediate effects on their health and safety.
• They are diagnosed with a serious illness and are scared or confused. They have health conditions that require complicated self-care.
• They are voting on a critical local issue affecting the community’s health and are relying on unfamiliar technical information.

How to Read Health News

If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), it’s always best to follow the Blitz slogan: “Keep Calm and Carry On.” On reading further, you’ll often find the headline has left out something important, such as, “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumors eventually. (Study funded by The Association of Tea Marketing).”

The most important rule to remember is: don’t automatically believe the headline. It is there to draw you into buying the paper and reading the story. Would you read an article called, “Coffee pretty unlikely to cause cancer, but you never know”? Probably not.

To avoid spraying your newspaper with coffee in the future, you need to analyze the article to see what it says about the research it is reporting on. Consider the following questions to help you figure out which articles you’re going to believe and which you’re not.

Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that has yet to be published.

Is the article based on a conference abstract?

Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinized by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. For these reasons, articles based on conference abstracts should be no cause for alarm. Don’t panic or rush off to your doctor.

Was the research in humans?

Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. These stories are regularly accompanied by pictures of humans, which creates the illusion that the miracle cure came from human studies. Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t. So there is no need to start eating large amounts of the “wonder food” featured in the article.

How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power,” and are also more susceptible to finding things (including things that are wrong) purely by chance.

You can visualize this by thinking about tossing a coin. We know that if we toss a coin the chance of getting a head is the same as that of getting a tail—50/50. However, if we didn’t know this and we tossed a coin four times and got three heads and one tail, we might conclude that getting heads was more likely than tails. But this chance finding would be wrong. If we tossed the coin 500 times—i.e. gave the experiment more “power”—we’d be more likely to get a heads/tails ratio close to 50/50, giving us a better idea of the true odds. When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, treat it with caution.

Did the study have a control group?

There are many different types of studies appropriate for answering different types of questions. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. If the study doesn’t have a control group, then it’s difficult to attribute results to the treatment or exposure with any level of certainty.

Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/ exposed group and some people to be in the control group. This is what happens in a randomized controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. So when reading about a drug, food or treatment that is supposed to have an effect, you want to look for evidence of a control group, and ideally, evidence that the study was an RCT. Without either, retain some healthy skepticism.

Did the study actually assess what’s in the headline?

This one is a bit tricky to explain without going into a lot of detail about things called proxy outcomes. Instead, bear in mind this key point: the research needs to have examined what is being talked about in the headline and article. (Somewhat alarmingly, this isn’t always the case.)

For example, you might read a headline that claims, “Tomatoes reduce the risk of heart attacks”. What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research, treat it with a pinch of salt.

Who paid for and conducted the study?

This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested—be it a drug, vitamin cream, or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest.

Should you “shoot the messenger”?

Overblown claims might not necessarily be due to the news reporting itself. Although journalists can sometimes misinterpret a piece of research, at other times the researchers (or other interested parties) over-extrapolate, making claims their research doesn’t support. These claims are then repeated by the journalists.

Given that erroneous claims can come from a variety of places, don’t automatically assume they come from the journalist. Instead, use the questions above to figure out for yourself what you’re going to believe and what you’re not.

How and Where to Find Reliable Health Information on the Internet

The Healthfinder website is the federal government’s gateway for reliable information from U.S. government agencies and other organizations. The site displays selected resources of consumer health and human services information. These sources have been reviewed and found reliable and credible.

Health Information on the Web

• MedlinePlus Guide to Healthy Web Surfing
• Finding Reliable Health Information Online
• How To Evaluate Health Information on the Internet

The Social Life of Health Information

Where do you go for health information? According to the Pew Research Center, most people seek information from doctors, nurses, and other health professionals first but the Internet and peers are also a significant source.

The Pew Research Center conducted a telephone survey in 2010 to find out how Americans are getting their health information.

“The survey finds that, of the 74% of adults who use the internet:

• 80% of internet users have looked online for information about any of 15 health topics such as a specific disease or treatment. This translates to 59% of all adults.
• 34% of internet users, or 25% of adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 25% of internet users, or 19% of adults, have watched an online video about health or medical issues.
• 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
• 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs.
• 16% of internet users, or 12% of adults, have consulted online rankings or reviews of doctors or other providers.
• 15% of internet users, or 11% of adults, have consulted online rankings or reviews of hospitals or other medical facilities.

Of those who use social network sites (62% of adult internet users, or 46% of all adults):

• 23% of social network site users, or 11% of adults, have followed their friends’ personal health experiences or updates on the site.
• 17% of social network site users, or 8% of adults, have used social networking sites to remember or memorialize other people who suffered from a certain health condition.
• 15% of social network site users, or 7% of adults, have gotten any health information on the sites.”

Where do you go for health information? According to the Pew Research Center, most people seek information from doctors, nurses, and other health professionals first but the Internet and peers are also a significant source. For details, see the Summary of Findings.

Questions are the Answer

Your health depends on good communication. Asking questions and providing information to your doctor and other care providers can improve your care.

Quality health care is a team effort. You play an important role. One of the best ways to communicate with your doctor and health care team is by asking questions. Because time is limited during medical appointments, you will feel less rushed if you prepare your questions before your appointment.

• Your doctor wants your questions.
• Doctors know a lot about a lot of things, but they don’t always know everything about you or what is best for you.
• Your questions give your doctor and health care team important information about you, such as your most important health care concerns.
• That is why they need you to speak up.

In this video, a patient shares why it’s important to ask questions and offer ways that you can ask questions and get your health care needs met:

By asking questions about her medicines, this young woman got the correct diagnosis and feels better than ever.

The Agency for Healthcare Research and Quality has created more videos about asking your doctors questions. In these short, compelling videos, patients talk about how simple questions can help you take better care of yourself, feel better, and get the right care at the right time. Doctors and nurses talk about how your questions help them take better care of you and offer advice on how you can be an active member of your health care team and get your most pressing questions answered.

Contemporary Health Concern: Affordable Health Care Act

How much do you know the Affordable Health Care Act? You need to be fully informed about what it provides. Because of the Affordable Care Act, women in private plans and Medicare already have received potentially life-saving services, such as mammograms, cholesterol screenings, and flu shots at no extra cost. Effective August 1, 2012, the law builds on these benefits, requiring new, non-grandfathered private health plans to offer eight additional screenings and tests for adolescent and adult women at no extra charge. According to a new report, about 47 million women are eligible for these new additional preventive services that address their unique health care needs. These 8 New Prevention-Related Services for Women, are:

• Well-woman visits
• Gestational diabetes screening for pregnant women
• Domestic and interpersonal violence screening and counseling
• FDA-approved contraception methods, and contraceptive education and counseling
• Breastfeeding support, supplies, and counseling
• HPV DNA testing, for women 30 or older
• Sexually transmitted infections counseling
• HIV screening and counseling for sexually-active women

Furthermore, the Affordable Care Act created the new Pre-Existing Condition Insurance Plan (PCIP) program to make health insurance available to Americans denied coverage by private insurance companies because of a pre-existing condition. Coverage for people living with such conditions as diabetes, asthma, cancer, and HIV/AIDS has often been priced out of the reach of most Americans who buy their own insurance, and this has resulted in a lack of coverage for millions. The temporary program covers a broad range of health benefits and is designed as a bridge for people with pre-existing conditions who cannot obtain health insurance coverage in today’s private insurance market.

In 2014, all Americans—regardless of their health status—will have access to affordable coverage either through their employer or through new competitive marketplaces called Exchanges, and insurers will be prohibited from charging more or denying coverage to anyone based on the state of their health.

Watch this tour of the HealthCare.gov website to find out more:

https://youtu.be/UCkX_1utL9M