There’s been a trend in some health literacy papers, presentations and conversations I’ve seen lately. I’ve noticed one way health literacy can become an obstacle to better health outcomes–and it might not be the one you’re thinking.
Listen here and read the transcript below.
PS – As you may have heard, my podcast hosting duties were to be taken over by my cat, Barley. She has since informed me of her intent to remain in her current position as a full-time cat and megafloof, and so I remain your humble host.
Ah, health literacy. It’s been a while since I’ve dedicated an episode to the topic that drew me into the health sector to begin with, after a career in education and higher ed. I do my best to keep up with the field, though lately it feels more like I’m playing catch-up. But I want to respond to something I’ve noticed in some recent talks, papers, conversations. I want to talk about when health literacy gets in the way.
Hi everybody. I’m Dr. Anne Marie Liebel, and this is “10 Minutes to Better Patient Communication” from Health Communication Partners, your partners in health-equity focused education and communication. visit healthcommunicationpartners.com.
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So, dear friends, I don’t know what health literacy conversations you’re in, or what papers have crossed your desk – hey, why not tell me? Hit me up on the socials, I’m on Twitter and Linked, because I’d love to hear. But what’s been concerning me is how many conversations about health literacy still treat health literacy as an individual trait or something that individuals possess.
What’s even more troubling are the conversations I’m hearing that imply or sometimes flat out state that a cause of health disparities is located in individual patients, through, you guessed it, their inadequate health literacy. Health professionals do not mean to imply negative things about their patients. That’s why I think it’s important we step back and look at the ways we’re writing and talking about patients in general, and in this case their health literacy, however you understand the concept. So I’m going to play for you now something I shared a while back about when health literacy gets in the way.
You want patients to have health information in a way that they can use. You want to share what you know, in a way that will make a positive influence on patients’ lives, in the short and long term. You know that health literacy has to do with patients’ understanding of health information. And so, clever people that you are, you figure that health literacy somehow plays a part in patient education.
And you’re right; it does. More than you may think. Certainly more than you’ll learn from me in this short episode. But I will dig in here and offer some thoughts about how health literacy can present a kind of stumbling block in patient/client education. And it might not be the one you think.
As you may know, I’m particularly interested in what language, literacy and education have to do with each other in and beyond the health sector. So I’ve been keeping an eye on the implications of health literacy research for the practice of patient education.
Back in the summer of 2017, the NAM made an argument in a Discussion Paper for what health literacy, health education, and health communication have in common. I like this paper; links are in the show notes, and I’m going to quote you from some of it now:
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”)
The authors draw a pretty strong line connecting the sometimes silo’ed fields of health literacy, health education, and health communication, and make a compelling case for collaboration among them. I’m using these statements as a grounding for what I’m going to say about the stumbling block.
Health literacy research has helped raised awareness of many issues related to patient education. Eliminating jargon, right? That’s important, and you’ve been doing that. Providing the same message in multiple formats, again important, and that’s especially happening especially in the digital realm.
There is growing awareness that health literacy involves interactions between and among individuals; but also between people and materials; and between people and their contexts.
Health literacy research also has been asking providers to recognize that improving health outcomes involves understanding their patients’ thinking, knowledge, resources, and goals. And there’s much more that health literacy research has brought to the fore – including issues involving providers, patients, materials, contexts, and policies.
But can health literacy get in the way of patient/client education?
Patient education is a very complex endeavor, you don’t need me to tell you that. You educate patients under (sometimes unbelievable) constraints. You often have a great deal of complexity to work with. And everyone learns differently, right? Add to this the fact that there can be subtle pressures against thinking about your patients or clients as capable learners. Sometimes, patients can be framed or positioned in negative ways even by well-meaning research, theories, practices, or policies. And health literacy research is no exception. These taken-for-granted arrangements can become part of institutional norms, and creep into providers’ everyday actions.
For example, a nurse manager told me how upset she was, when she looked at a patient chart when she was about to meet with this patient, and saw that her patient was identified as illiterate. She was unsure how she should approach the patient. In talking to me, she seemed disappointed in herself, and in the fact that she did not know what do to in the moment as she began the patient encounter.
As we continued talking, she realized that the one word “illiterate” had negatively impacted her thinking about the patient as a person. That patient suddenly seemed too different.
The term “illiteracy” (I’ve pointed out before) has been used as a pejorative term for decades, all around the world, 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 really necessary to function in the modern world. This is as untrue as it is damaging. That’s not to say that having literacy doesn’t help in ways in life. But people who are repeatedly told they are illiterate come to believe negative things about themselves. And in this case, with the nurse manage, the relationship between patient and provider was damaged.
In another example, I was talking with a client about patient education materials she made. One of the first things clients tell me when I get ready to look at their materials is the ‘reading level’ they have them at. Reading levels are easy to calculate, and they do draw attention to some important stylistic faux pas, such as too many overly-long sentences. But when I mentioned that The Joint Commission recommends health information be written at a fifth-grade level or lower (Grabeel et al, 2018), she responded, “Then I have to write this for an 11-year-old.”
Whoa there! Of course she doesn’t have to write her materials for an 11-year-old. That is not the point. Her audience is not children. But it’s understandable, when someone hears ‘fifth grade,’ to think ’11 year old.’ Again, suddenly, the audience to her seemed too different. Children, rather than adults.
Reliance on ‘reading levels’ is problematic – in part because of such implications. Anything that makes you feel more distant from your patient can make patient education seem more difficult and daunting. That stumbling block.
So what can you do? Let’s get around the block. I’ve got three quick reminders for you:
#1 Everyone can learn.
Let yourself reconsider any theory, policy, strategy, statement, or research that implies some people can’t learn. Or are not learning, no longer learning, or not interested in learning. Many studies prove that even people who are labelled as illiterate by one measure or another draw on a broad range of strategies when it comes to literacy and numeracy activities in their lives. They have multiple sophisticated ways of reading a text or image, of keeping track of items, of measuring and weighing, estimating and calculating. Be on guard for implications that ‘those kinds of people’ just can’t learn.
#2 A patient’s health literacy level is not a proxy for their education. A patient’s health literacy level is not a proxy for their intelligence.
But it can be treated in that way, albeit unintentionally. It may be more helpful to think of health literacy as someone’s savvy with certain kinds of information, certain terms, and certain systems. maybe ways of doing things that are specific to a certain context, and known to insiders in that context.
#3 Approach your patient as someone who uses language in sophisticated ways in their everyday life. Because they do! Speak with this assumption in mind. You’ll feel less disconnected from your patient, and you can focus on the task at hand.
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.
This has been 10 minutes to better patient communication for Health Communication Partners. I’m Dr. Anne Marie Liebel.