A few months ago, I decided to conduct an informal survey. I’d begun thinking about the relationships between health literacy research and health care workers’ everyday practice. Since I often get to talk with physicians one-on-one, I decided to ask the next few physicians I encountered a simple question:
When you hear the phrase ‘health literacy,’ what does it mean to you?
I thought the answers would be varied, and they were. I want to share one with you today, and unpack it in a way I hope will be helpful.
One physician’s response
Here is one unedited response. (I italicize words that were emphasized):
“Health literacy is how literate the patient is with healthcare issues. Some people who are pretty smart aren’t health literate, and some people who are not so bright are health literate. People reading, and having interest in their bodies. Some people are disconnected from their bodies. And, each person’s ability to understand what you’re telling them, the language that you use. Sometimes there’s an imbalance in the language you use and the language they use.”
I want to help this physician reach and support patients. Is it possible for health literacy to live up to the very complex relationships mentioned in this remarkable response?
When health literacy burst on the scene, it brought some needed attention to the disconnects between medical language and people’s everyday language.
Focus quickly turned to the health messages being communicated to patients—with an emphasis on written messages. Their form, content, layout, accessibility, vocabulary, and other syntactic and semiotic features.
Yes, paying attention to the messages providers send, and the assumptions in them, is crucial. But the physician quoted above, along with others I’ve spoken to–and many health literacy researchers–know that more is needed.
For example, from Health Literacy Research and Practice: A Needed Paradigm Shift:
“Imagine the positive impact that could develop if the entire industry that has sprung up around rewriting documents using ‘plain language’ began to set the evaluation bar at actual use and effects of the information, versus simply lowering the complexity of grammar and word length.”
When we begin looking at language in use, by actual people, with real lives–lives that they bring with them into real conversations that happen in specific contexts–it gets even more complicated.
The physician above clearly gets that complexity. Fortunately, there are ways forward that honor that complexity.
There’s quite a lot in this physician’s statement – more than I can get into in this short article. But I want to draw attention to two particular phrases in this response.
“Some people who are pretty smart aren’t health literate, and some people who are not so bright are health literate”
I don’t know about you, but I’ve noticed that some of the ways health literacy gets talked about (especially in popular media) seem to imply pretty heavily that health literacy is a function of formal education. What’s worse is when education acts as a (polite?) proxy for intelligence.
Because someone is very highly educated does not mean they magically have all the information they need to deal with their health situation. Nor does it mean they know the difference between similar-sounding medical terms.
We do everyone a disservice when we treat health literacy as connected to education, or some perception of intelligence.
“Sometimes there’s an imbalance in the language you use and the language they use”
You know that language is two-way. Conversations are dialogues, not monologues.
There is an imbalance to be sure – and it’s in language as well as power. More than 40 years of research have analyzed the power differentials in provider/patient interactions. Specifically, these power imbalances are both reflected in, and maintained by, language. And most of this escapes our notice.
What would it be like if we conceptualized, researched, and acted on health literacy in ways that addresses these issues?
That disentangles literacy from education, or intelligence, or motivation?
That fronts relationships between language and power?
That allows for complexity in the way that physician understands it?
Well, some studies already have. I’m going to tell you about three of them.
Health literacy as social practice
These three studies are among those that share a core orientation: health literacy as a social practice. Here are some examples of what that means, from the studies themselves.
In their research report, Papen and Walters (2008) 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”
Hunter and Franken (2012) explicitly build on Papen and Walter’s definition, adding that “While skills are clearly important, they are inadequate for conceptualising health literacy in use.”
Similarly, Santos et al (2014) were interested in health literacy as skill and social practice. Their study focuses on health literacy interventions at both the individual and social levels.
Health literacy IRL
Each of these studies shares the goal of advancing people’s health literacy. They all pursue this goal by researching language in use (sometimes by patients, sometimes by providers, sometimes on written texts) in everyday environments. You know, in real life.
Papen and Walters “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 (among other things)
- the many literacy, language and numeracy demands placed upon people in health-care settings–orally and in writing.
- how their participants took up and made sense of health-related information.
- how their participants found out about the health matters that concerned them.
Their focus was especially on the difficulties their participants encountered in these processes.
Hunter and Franken, doing similar work, found that “the language and content of health information documents favour white, middle-class, educated patients who are predisposed to comply with medical advice.”
Building interventions around these and similar findings, Santos et al found health literacy interventions based on a social view of health literacy had a positive impact on the participants, who
“despite varying proficiency levels, were able to acquire knowledge of type 2 diabetes risks and prevention strategies, and apply this knowledge to the affirmation of healthy everyday behaviors, or the planned revision of unhealthy ones.”
All of these studies recognize language and culture as resources, while highlighting inequalities in representation and access. The power piece.
Implications for providers
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.
But we do not want to romanticize these away from the very real structural factors that limit access–and maintain inequality.
And we want to keep in mind the fact that some of this limiting happens through language itself.
Here are some implications for everyday practice:
- Here are 11 tips based on this view of health literacy.
- 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, health care providers have it!
This same view of literacy has been used by practitioners who are interested in researching their own practice. So the tools exist for you to research your language along with your patients’ language (if you’re so inclined, by all means write me).
As the physician quoted in the beginning is aware, 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.