Cancer.
Loop Diuretics.
Intusseption.
Cholecystectomy.
Hypertrophic Cardiomyopathy.
Of these five words, how many did you recognize, and how many did you understand? Whether all five or none at all, your answer is probably related to:
a) your personal interest in the condition (e.g, if you or your family/ friends have had it),
b) your level of understanding with the healthcare field, or
c) your willingness to Google Search the words that may have been confusing to you.
Either way, it is clear that in today’s world—with the Internet becoming ubiquitous—patients have the potential to access a huge array of resources, case histories, and information about just about any condition imaginable.
There is a wide range in the numbers of individuals who can access health care information, and the people who can understand and use that information. This can have significant impact on their ability to get and stay well.
What Exactly is Health Literacy?
The most widely-accepted definition of health literacy comes from the Institute of Medicine (IOM) in 2010. It states that health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Put simply, health literacy refers to the way patients understand what is happening with their health and have the ability to make rational decisions about what to do.
Although health literacy is linked with basic literacy skills, they are not the same thing. While many patients can at least read and process short texts and documents, over 47% of adults in the United States have “difficulty locating, matching, and integrating information in written texts with accuracy and consistency” (per IOM, 2004). This means that many patients that may not be picked up in traditional literacy screens still have problems applying their knowledge to the healthcare system—such as scheduling appointments, taking medications, negotiating with insurance, understanding consent forms, and describing accurate medical histories to their doctors.
This problem is widespread. According to the most recent National Assessment of Health Literacy, only about 12% of Americans today have “proficient health literacy”, and over 1/3rd of Americans (roughly 77 million people) are unable to follow directions on a prescription drug label or schedule immunizations based on a simple chart.
Secondly, health literacy is context dependent, and not something that can be ascertained just by looking. Even if patients are highly literate, they may be unfamiliar with human physiology or particular aspects of medicine, scared or confused regarding their specific diagnosis, or simply unable to navigate the increasingly complex medical system we have today. Thirdly, poor health literacy tends to be associated with certain demographics, such as low socioeconomic status, lack of higher education or insurance, the elderly, non-native English speakers, and racial and ethnic minorities. This is especially troublesome, as many of these same demographics are at risk for severe and chronic diseases in which the lack of proper management and treatment can dramatically worsen their course.
Why is Health Literacy Important?
Unfortunately, the difference between having high or low health literacy has numerous and wide-reaching impacts on well-being throughout one’s life. In terms of health outcomes, studies show that patients with limited health literacy and chronic illness have:
- Higher likelihood of poor blood sugar control,
- Less knowledge of illness management than those with higher health literacy,
- Decreased ability to share in decision-making about cancer treatment,
- Lower adherence to medications, and
- Lower self-reported health status.
What Factors Lead to Poor Health Literacy in the 21st Century?
Unfortunately, scenarios like the one above are all too common. While there are many places to lay “blame” for poor health literacy, I believe that the causes seem to fall into three “buckets”: how physicians are trained, factors involving the patient, and society at large.
Speaking as a fourth year medical student, the process of learning about medicine has forced me to adapt a completely new vocabulary regarding the human body. “Middle” becomes “medial,” “feel/ touch” becomes “palpation,” “bumps” become “nodules.” While I have learned how to describe health conditions in a much more precise manner, with each year of medical education comes a further departure from the language that would be ideal for patients and laypeople to understand. Without meaning to, doctors often speak in a language that may not make sense to the patients that they treat. Additionally, many healthcare providers face increasing pressures to shorten their appointments and see more patients in less time. Since a proper assessment of health literacy requires a conversation on a range of topics, it is difficult to assess knowledge gaps and probe for difficulties in just one visit.
This problem can be exacerbated by patients who may be much older or younger, come from different racial or ethnic backgrounds, or have different education and/ or socio-economic status. It may be difficult for patients to feel comfortable asking questions regarding concepts that they don’t understand or to disclose personal health information. In fact, patients with low health literacy often self-report that they attempt to hide their lack of understanding. Often, this can be seen as patients who appear to agree with the clinical discussion by nodding or smiling, wanting to fill out forms or questionnaires at a later time, or giving alternate reasons as to why they cannot read resources, such as “forgetting their glasses.” Once again, these examples reiterate the point that health literacy is not a metric that can be simply ascertained by looking.
How Can We Work Together For Better Health?
While many patients are affected by low health literacy and adverse health outcomes are evident, it is surprisingly difficult to detect and fix. But many opportunities exist for healthcare professionals and institutions to begin improving their ability to help these at-risk populations. At a macro-level, hospitals and healthcare clinics must acknowledge the problem and develop top-down metrics to attack this issue. Healthcare materials should be redesigned to include simple language and appropriate figures, with information presented in the order in which it is needed for the reader to understand it. While time is an issue, proper patient education should be a priority for all clinicians. Research shows that a back-and-forth dialogue between patients and physicians provides a larger benefit in health education than any other form of media. An institution-wide emphasis on “teaching moments,” such as having a discussion of proper contraceptive use at the same time as discussing HIV/AIDS and other STD disease prevention, or the coupling of public health education with routine immunizations, is also beneficial.
Experts tend to agree that there is an opportunity to observe the Universal Precaution rule of health literacy. AHRQ recommends assuming that every patient may have difficulty understanding and suggests creating an environment where all patients can thrive. They note that only 12 percent of U.S. adults today have the health literacy skills needed to manage the demands of our complex health care system.
Doctors and healthcare professionals can also employ strategies to improve their patient-communication skills. People tend to retain less than half of what is said during their encounters with physicians, but techniques exist to improve patient understanding during their visits.
- Use plain, common language. Instead of explaining all of the pathophysiology and treatment for hypertension at once, limit the discussion to three main points, which can be repeated for emphasis later on in the visit.
- Experts in health literacy recommend the teach-back method, where healthcare professionals ask patients to explain a concept or plan in their own words back to the clinician.
- Use the “Ask Me 3” rule—where healthcare professionals encourage patients to know:
- What their main problem is,
- What they need to do about it, and
- The reason why it is important to take action—is another way of establishing a process of shared-decision making.
- Provide additional non-medical resources to patients and to encourage them to speak up and ask questions if they are confused or unsure about any part of their visit.
Taken together, all of these changes can slowly bring about a culture of support, education, and improved health for all those involved.