There’s exciting things happening in the health literacy field. As big as health literacy has become, the term can still cause some confusion. And for good reason! In this episode you’ll learn some not-so-basic basics about health literacy, and some suggestions to help you with health literacy in your context.
Health literacy is a pretty broad term, and because of that, it can be frustrating to work with, get advice on, or give advice on. I was writing a journal article about health literacy, and while I was writing it, I got a broadcast email from the Centers for Disease Control. The subject line was: “Do you really know what health literacy is?” This made me nervous!
Here, I’m considering some challenges you might face in health literacy–and some I’m facing–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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Alright, so what does health literacy really mean?
You know by now that there are many definitions of the term health literacy. You might also be aware that leaders in the field have been asking for a redefinition for years. Despite what we’ve learned over the decades about literacy and health literacy as a complex process, most research and most conversation is still focused on health literacy solely as an individual trait. In other words, Health literacy still gets talked about as something individuals have, or don’t have, in adequate amounts.
Enter the US Department of Health and Human Services! This past summer they accepted public input into an updated definition of Health Literacy for Healthy People 2030. They even gave us a working definition as a jumping off point. And here it is:
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. (Federal Register Notice)
There’s a lot to like about this working definition, I think especially its focus on health literacy as an interaction. I think this is an exciting step in the right direction and can’t wait to see what comes next.
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 being talked or written about.
The term literacy has frequently been used to refer to a set of skills, competencies, or capacities. Particularly those 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, along with those of systems-level responsiveness to health literacy. 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 of medicine involved. Yes, medical terminology. Also terms that sound the same but mean different things depending on context (words like “critical” or “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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But if it’s so important, why has it only been a big deal lately?
Well, 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 doing the work.
A longtime health literacy researcher confided in me that relabeling some 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, saying:
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. (“Improving Collaboration among Health Communication, Health Education, and Health Literacy”)
I’m not sure I could tell where the field of health literacy ends and the field of health communication begins, but I have some thoughts on where health literacy and patient education overlap and I deal with that in another episode.
What’s now called Health literacy has also been a concern in global development for decades. Literacy is often taught to adults as part of basic education efforts. Health topics are often taught along with literacy—sometimes as parts of literacy classes themselves. So there’s a significant body of research, decades deep, on the complicated relationships among health and literacy, and on the different ways people all over the world understand and navigate them.
What’s with all the “low” health literacy?
Health literacy is almost 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 need: what they 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.
Health literacy 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 still be treated in that way, even 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 the health system. It doesn’t mean that you know the difference between similar-sounding medical terms. Or that you’re savvy with insurance. Or you can 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. 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.
So I invite you to reflect on your own professional language use. Even for just one day or part of a day, think about some of the phrases or terminology you use as a professional. And consider: what kinds of assumptions about patients, and about what they know, do, or value, 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 if that’s not already obvious. So please reach out to me for support in the work you do around health literacy.