We’re still celebrating Health Literacy Month! In this episode, you’ll learn about one potential barrier to health literacy work that comes from within the health literacy field itself, and what you can do to get around it.
It’s health literacy month! If you’re someone who cares about health literacy and its connections to equity–and I think you are—in this episode, you’ll learn about one potential barrier to health literacy work that comes from within the health field itself. And of course, I’ll talk about how to get around it.
Hi everybody. I’m Dr. Anne Marie Liebel. This is 10 Minutes to Better Patient Communication from Health Communication Partners, a health-equity oriented, independent education and communication consultancy. If your organization needs expert help on any topic in this series, visit healthcommunicationpartners.com.
Today’s episode sponsored by Maven Roth Group. Maven Roth is a progressively strong, women-owned creative agency with extensive experience in healthcare marketing, communications and advertising. Do you need an expert refresh on your patient education, Internal communications or onboarding materials? Maven Roth can help with those needs and more! Visit mavenroth.com today.
Many of the health professionals I know who care about health literacy are committed to taking action to improve the opportunities that real people have in their actual engagement with health services and health information wherever they live and work.
These are professionals working for change. That’s because health literacy allows us to focus on the patient side, the patient world, the patient’s thoughts and processes and actions. Health literacy pros are trying to prepare individuals and groups not for some imagined or hypothetical situation, but actual health related situations in people’s real lives, across a variety of contexts.
But there’s an internal obstacle here. Health literacy research has a kind of distance from real life. Largely, we’re limited to big data sets or surveys. And those surveys tend to talk about planned action, or hypothetical action. So we are swimming in data, but there’s not so many people with real voices. So we are left at a distance from real life, and from the different ways health literacy shows up in real life.
Now, many health professionals who pay attention to health literacy understand that people’s health literacy actions and experiences are embedded in their social worlds, tied to their identities and values, as well as being connected to wider social power relations. But the bulk of the research base is still about hypothetical or imagined and not the real.
There’s also this: more than one public health pro has told me that there are too many people in our field who don’t ever really talk to people in the communities who are their clients. Now I’m not blaming anybody here! Sometimes, your position doesn’t allow you to have direct community access as much as you would like.
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But I’ve got good news: If you’re hungry for some on the ground, close looks at health literacy in action, you’re in luck. Because it’s already happening, and it’s been happening for decades. Health literacy research on real people’s thoughts and actions around real health literacy interactions in their lives.
And for this, we’re gonna turn to one of this series’ earliest episodes on health literacy. Here it is!
I’m going to tell you about three empirical studies. Each of these studies shares the goal of advancing people’s health literacy. They all pursue this goal by researching language in use in everyday environments. You know, in real life.
Links are in the show notes. I’m not involved in any of these studies, I have nothing to do with them except for, I’m a fan!
Papen and Walters (2008) did a nearly three year study of adults in the northwest of England and these adults were in an adult literacy learning programs. This study was about these people’s experiences with language and literacy around issues of their health, and their encounters with providers and experiences in the National Health System.
In their research report, there are many reports written off this lengthy study, Papen and Walters explain that:
“Another way of looking at health literacy – and literacy more generally – is to think of it as social practices: as activities which are always embedded in specific situations and contexts and whose actual shape and meaning can only be understood within these contexts”
They “looked beyond patients’ ability to make sense of certain words or follow instructions. We have tried to understand the broader context of their experience as patients and more generally as people being ill.”
Their research report describes the many literacy, language, and numeracy demands placed upon people in health-care settings—the “demands of having to read, write or act upon specific health texts.” They document how their participants took up and made sense of health-related information. They analyze how their participants found out about the health matters that concerned them. They find “the people in our study drew on a broad range of strategies and skills, allowing them to access health information and make sense of their experiences.”
A second study is Hunter and Franken (2012). They explicitly build on Papen and Walter’s definition, adding that “While skills are clearly important, they are inadequate for conceptualising health literacy in use.”
They were involved in another lengthy study called “The Health Literacy Project” in the Midlands region of New Zealand. The authors say:
“We proposed a broad research approach to investigating health literacy, which included not only health care information texts, but also health practitioners, who provide and disseminate health care information, and patients, who are the users of that information.”
Again there are multiple papers off this long term project, and I’m talking about one paper from phase one, that looked (as Papen and Walters had) at the literacy demands placed on patients through medical texts.
Hunter & Franken found that, “the language and content of health information documents favour white, middle-class, educated patients who are predisposed to comply with medical advice” and they they “minimally acknowledged New Zealand’s population diversity.”
Similarly, Maricel Santos et al (2014) were interested in health literacy as skill and social practice. They studied adults in a course for English for speakers of other languages in California as part of a 4-year project called “The ESL Diabetes Prevention Project.”
Similar to the other two studies, they were interested in what people’s actual experiences were around language when it came to their health, what they did in terms of language use, the challenges they faced, and how they managed. The authors give special attention to “the mechanisms by which social interaction and social support facilitate health literacy outcomes in ESL contexts”
Once they understood some of these, they designed and piloted a health literacy intervention which had a positive impact on their participants. “[T]he classroom pilot data provided some insight into the promise of a social view in health literacy intervention studies, one that does not reject the importance of cognitive skills but situates them in a broader, multilayered, and perhaps more accurate understanding of the way adults actually go about learning to be more ‘literate’ in our society and our health care system.”
By expanding this characterization of health literacy beyond reading and writing skills, researchers have helped us appreciate the many ways health and literacy are practiced, understood, and navigated in peoples’ everyday lives. Not just as individual cognition, but as social processes as well.
We become aware of the resources of individuals and groups when we treat people as actors and not just acted upon. But we do not want to get carried away from the very real structural factors that limit access, and maintain inequality…and the uncomfortable fact that some of this happens through our everyday language use.
So this is, in part, about the power of language to reinscribe inequality.
What can you do? Here are some implications for everyday practice:
- Start where your patients are, with what they are already reading, writing, and doing to be healthy.
- Reflect on your own professional language use. If ‘high’ health literacy is even a thing, arguably health care providers have it! How are you doing with maintaining the imbalance between you and them?
Health literacy is complex. But tools and resources exist to address this complexity. And you don’t have to be a researcher to use them.
If you are interested in taking your language use seriously, why not start with your metaphors? I’ve written a workshop shows you how to break down the metaphors you use, understand their cognitive and affective aspects, and evaluate them in use. On demand, right on healthcommunicationpartners.com
I’m Dr. Anne Marie Liebel, and this has been 10 Minutes to Better Patient Communication.