Because health literacy is such a broad term, it can be frustrating to work with, get advice on, or give advice on. This sentiment was front and center recently, when I gave a plenary about health literacy in a session the organizers had titled: “The Stumbling Block: Health Literacy.”
Here, I’m considering some challenges you might face in health literacy–both in research and practice. These have come up time and again in my reading of the research, and talking with providers, over the years.
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What does health literacy really mean?
You know by now that there are many definitions of the term health literacy. You may also be aware that leaders in the field have been advocating for a wholesale redefinition.
In 2016, a group of leading health literacy researchers and scholars issued a group statement as a Discussion Paper from the NAM, titled “Considerations for a new definition of health literacy.” In it, they take a brief look back at health literacy as a field, with the wisdom of hindsight:
“To date, what appears to be the most cited definition in the United States is that originally put forth by Ratzan and Parker in 2000— ‘The capacity of individuals to obtain, process, and understand basic health information and services needed to make appropriate health decisions.’
This definition, as is the case with the majority of existing definitions, focuses on defining health literacy as an individual skill or ability. Recognition has been growing, however, that health literacy is not solely an individual characteristic.”
Despite the conceptual developments of the last decade around health literacy as a complex process, individualized approaches toward health literacy remain dominant in research. Health literacy, in professional and public discourse, still gets talked about as something individuals have, or don’t have, in adequate amounts.
Enter the Department of Health and Human Services! A recent update from the CDC announces:
“The Department of Health and Human Services is seeking input into an updated definition of Health Literacy for Healthy People 2030. The Secretary’s Advisory Committee on National Health Promotion and Disease Prevention proposed a working definition of Health Literacy. This proposed definition is meant to be only a starting point.”
Here’s that working definition, from the Federal Register Notice
“The Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives used this working definition of health literacy for 2030:
Health literacy occurs when a society provides accurate health information and services that people can easily find, understand, and use to inform their decisions and actions.
This working definition reflects the evolution of the concept of health literacy toward a consensus that health literacy is affected not only by an individual’s capacities, but also by the accessibility, clarity, and actionability of health information and health services.”
You can read more about the proposed new definition here. Written comments will be accepted by August 5, 2019 via email at Definehealthliteracy@HHS.gov.
I think this is an exciting step in the right direction and can’t wait to see what comes next.
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What does health literacy include?
Like with many other topics, there are different schools of thought out there about health literacy. And people get fired up about one or another facet of health literacy. Here are some things I’ve noticed that are explicitly or implicitly included in health literacy, when it’s talked or written about.
The term literacy has frequently been used to refer to a set of skills, competencies, or capacities. Particularly involving reading.
That’s the case in health literacy as well.
- Can a patient read the information he or she is given?
- What attention is being paid to the construction of written documents by health systems?
- Where and how are images being used, to what effect?
Clearly these are important considerations, and the majority of health literacy research reflects this focus.
But wait, there’s more!
From the start, even the earliest health literacy research has included individuals knowing something about health care systems. So, being familiar with the ways that organizations work is part of what is (often tacitly) assumed in an individual’s health literacy.
And…there’s a staggering range of biomedical subject areas that people are supposed to have some familiarity with or understanding of, where health literacy is concerned.
Then there’s the specialized language involved. Yes, medical terminology. And quirky names that pharmaceutical companies give their products. There’s also terms whose meaning changes drastically with context (like “critical” and “orientation”).
Hold onto your hats: health literacy research also explicitly involves all sorts of meta-processes. Like knowing what you know, knowing what you don’t know, knowing where to find out what you don’t know, and how to judge its reliability.
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If it’s so important, why has it only been a big deal lately?
Health literacy is not new. The phrase isn’t even new. Much of the work being done that’s now called ‘health literacy’ has been going on for decades around the world, under different terms. Sometimes the terminology used to refer to the intersections between health and literacy depends on the sector or discipline that’s doing the work.
A longtime health literacy researcher confided in me that relabeling ‘health communication’ research as ‘health literacy’ research was a strategic response to a change in the winds of funding. So, there’s that, too.
A few years ago, NAM made an argument in a Discussion Paper for what health literacy, health education, and health communication have in common:
Health communication, health education, and health literacy are rooted in a common understanding of human communication and share the goals of enhancing human health, improving health outcomes, and reducing health disparities.
The fields of health communication, health education, and health literacy share the idea that strategic communication—using the tools of spoken, written, and gestured communication in a variety of cultural settings—can help individuals, groups, and whole systems grow, learn, and make positive health decisions. (“Improving Collaboration among Health Communication, Health Education, and Health Literacy”)
I’m not sure I could tell where health literacy ends and health communication begins, but here’s some of what I think health literacy has to do with patient education.
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What’s with all the “low” health literacy?
Health literacy is nearly always framed as a patient safety, quality, or risk stratification issue. This often means a kind of ‘needs’ focus, which can unintentionally lead to parking it on what people don’t know, don’t do, don’t have.
Otherwise known as a deficit perspective. You’ve heard me say before how damaging this can be.
Researchers are explicit about the fact that a health literacy assessment score is not a proxy for education. A patient’s health literacy level is not a proxy for intelligence.
But it can be treated in that way, albeit unintentionally. We do everyone a disservice when we treat health literacy as connected to education, or some perception of intelligence.
You know, for instance, that being highly educated does not mean having all the information one needs to deal with a health situation. Or knowing the difference between similar-sounding medical terms. Or being savvy with insurance. Or easily navigating a health system. All of this is part of health literacy.
It can also be easy to focus on a person’s perceived weaknesses, based on what we think is or should be normal, basic, or fundamental. We (sometimes unconsciously) can think that the ways other people do things are problematic.
“Illiteracy” (I’ve pointed out before) has been used as a pejorative term for decades, and “illiterate” can quickly take on negative connotations, too. Labels such as this can conjure images of someone unintelligent, uninformed, backward, or somehow lacking in what’s necessary to function in the modern world.
This is as untrue as it is damaging. Think of all the common, everyday tasks that involve literacy, which your patient might engage in:
- keeping bank accounts
- making or using shopping lists
- calculating prices
- reading recipes
- using a smartphone
- reading signs
- reading/annotating/reciting sacred texts
Your patient may have scored badly on an assessment, but that doesn’t mean they don’t do any reading or writing in their everyday lives. Remember this when you face your patient, and you’ll both benefit.
If ‘high’ health literacy is even a thing, health care professionals have it!
So I invite you to reflect on your own professional language use. Question common practices, processes, even phrases or terminology. Examine the underlying assumptions about patients, and about what they know, do, and value, that are embedded within these words and phrases. (Click here if you want to get very good at doing this.)
I’m a fan of yours (and of health literacy and patient education, if that’s not already obvious). So please reach out to me for support in the work you do around health literacy and patient education.
