Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month, and your host at Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations with some amazing people. You will hear what health literacy is, why it matters and ways we all can help. Beyond learning what to do and why to do it, I hope that the people you meet and listen to inspire you, as they inspire me, to make a health literacy difference.
Today, I’m talking with Dr. Rima Rudd, who is a senior lecturer on society, human development and health at the Harvard School of Public Health. Her work centers on health communication and the design and evaluation of public health programs.
Dr. Rudd is widely recognized as a leader in health literacy — helping to shape both the research and practice agenda in the US, Canada and Europe. Dr. Rudd works closely with the adult education, public health, oral health and medical sectors. Her current research is looking at literacy related disparities and literacy related barriers to health programs, services and care. Welcome, Dr. Rudd.
Rima: Thank you, Helen. I’m really delighted to be part of this.
Helen: You and I have known each other for many years. We’ve been doing this health literacy work for a long time. Of course, I’m well versed in health. That’s been my career. I know about literacy. Certainly, we both know about health literacy. What do you mean by the terms “literacy related disparities” and “literacy related barriers” as they relate to healthcare?
Rima: Helen, I think we were both jarred with the published findings from the First National Adult Literacy Survey that came out in 1993. I think with that survey, for the very first time, we really began to understand very concretely the literacy skills of the adult population in the US and then a few years later, of most European industrialized nations.
I think it was a wake-up call and reminder that those of us schooled in a variety of disciplines and professions were accustomed to speaking with people in our group and related professions. I think we lost touch sometimes with problems of words, jargon, everyday speech and the demands of the modern society.
Helen: Did that report come out in 1993?
Helen: At the time, I was working at a hospital. I used to write a lot of worksheets and give out a lot of written information. Wow, was that a comeuppance when I realized the patients I was writing for didn’t understand the information. Are you talking about those disparities and barriers?
Rima: In part. I don’t mean to be disparaging to anyone who wrote health materials at the time or subsequently after. I was, of course, among them. It’s not so much that it was a wake-up call as to what people could or couldn’t do, but also as to how poorly we were doing our job as communicators. We were forgetting to really focus on the common language of everyday life.
Helen: Tell us more what you mean about that common language of everyday life.
Rima: I’ve done several lit reviews of this growing field of health literacy. The bulk of the literature in peer-reviewed articles actually focuses on assessments of health materials. We do very poorly. Our health materials are filled with jargon and scientific and medical terms that don’t resonate in the sense that people don’t use these terms in everyday language.
I’ll give you just one easy example. I remember when dentists used to talk about your gums and gum disease. Then suddenly, my dentist was talking to me about tissue. I was able to make that translation, knowing that he meant gum for tissue, but that is also a word that has to do with blowing our nose.
That’s just one simple example of how words have very different meanings, and as professional groups try to fancy up their language, we’re stepping away from the language of everyday talk.
I think that we have to be respectful of the everyday words that people use in common discourse. At least be aware that when we use a word that has a specialized meaning, we ought to explain ourselves. We ought to make sure that we’re on the same page.
Helen: That’s a great example about the dentist going from an easy three-letter word “gum” to “tissue,” which has certainly more than one meaning.
You talked about people fancying up their language. Why in the world do you think that we, and I include myself, as health communicators, are coming up with convoluted, more complicated language at the same time that people need to understand us more than ever?
Rima: I think this is a long-held tradition. I remember my ninth grade English teacher really encouraging all of us to expand our vocabulary. I think it’s a great idea.
I remember working with Diana Chapman Walsh who had been the chair of my department. We were writing an article together. She sent back my first draft and highlighted a couple of words. She put a circle around the word “utilize” and said, “Rima, is there something wrong with the word “use”? Is that not respectable?” Of course, that made me laugh, and it stands as a good example.
I think it’s very important. As people who enjoy theater, plays, novels and poetry, we certainly need to expand our vocabulary. There’s nothing wrong with a wonderfully rich language.
When we’re focused on providing people with tools for action, as we need to do with health, we have to be careful. We must give careful directions about taking care of yourself, taking care of a wound and taking medicine. We have to be very careful to make sure that our language is direct, clear and simple. That is not the time for fancy language or expanding vocabulary.
Helen: I know that you’re looking very closely and doing a lot of research about deconstructing the language that we are using and looking at what we are asking of our patients and families in terms of our instructions. That has very much of a linguistic and literacy base to this. Can you tell us a little bit more about what we are asking of people and how language and words make a difference?
Rima: Yes. The deconstruction task that I’ve taken on with members of our health literacy team begins with deconstructing activities. Let me just give you an example that has to do with chronic disease management.
We very often talk about an activity such as taking medicine. That provides a good, and perhaps very simple, example of how to deconstruct an activity. When we look at that activity of taking medicine, we can break it down into component parts.
There are many different tasks involved in taking medicine. For example, in order to do that, you have to get a prescription filled, bring the medicine home and be able to read the label. If, as is true for many people, you happen to be taking other medicines, you have to differentiate Medicine A from Medicine B. You really have to read the label with a great deal of care and be able to at least recognize, if not pronounce, the name of the medicine.
You have to be able to read and comprehend the directions. The directions are very frequently poorly written. That’s why there’s a big movement afoot to really improve directions on labels for medication.
Let’s say you’re told that you need to take this medicine on an empty stomach. That is a jargon term. You have to be able to be familiar with the words of the trade. An empty stomach means not just that you haven’t eaten for the past two hours when you take the medicine but that you’re not going to eat for another two to three hours. That’s not clearly directed.
Other activities have to do with looking at the time that you’re taking the medicine and being able to use a clock. You need to be able to look at the days of the week that you’re going to take the medicine. You might take some arthritis medicine only once a week.
You need to be able to track and monitor these activities and perhaps use a calendar to make sure that you don’t run out of medicine. This means that you need to know when you have to get a refill so that you’re not skipping a couple of days.
I don’t mean to go on and on with that, but as you can see, that activity of taking medicine really covers a wide variety of tasks.
In our deconstruction process, we identify the tasks that people have to engage in. We also simultaneously identify the tools that people need to use in order to accomplish those tasks: a label, clock and calendar. Then we were able to identify the literacy skills that people need to apply to accomplish the task and use the tools.
Helen: Listening to your list, I’m totally exhausted. I didn’t count how many different tasks there were, but I would guess that for your example of taking one medicine, and that’s all you were talking about, you must have had 15 or so separate tasks that we are expecting and assuming that people can do.
My background is an occupational therapist. I’m used to breaking activity down into its simplest components. The fact that you were looking at the whole of what we are asking in healthcare is really quite fascinating.
Am I the only one who hadn’t thought about this, or is this a factor that’s going on throughout healthcare? Are we all equally un-savvy about what we are expecting and assuming our patients and families can do?
Rima: In order to help grow this field, I am like you, asking for a systemic change as a matter of fact. We’re talking to a wide variety of professional groups. This activity comes as a surprise to many people, but they really enjoy engaging in it, and I think we learn a great deal from it.
I had the privilege of being in a room, over the course of several meetings, with adult education research people, adult education practitioners, nurses, doctors and public-health folks. We, for example, looked at all chronic diseases. We listed all the activities that people need to engage in to manage your chronic disease. We highlighted those that are common to all chronic diseases. Then together we began to deconstruct those activities.
I’ll tell you, it really took the contribution of all of us from different fields and perspectives to begin to break that down. We found that to be extraordinarily insightful.
I’ve shared this widely. There are a number of colleagues who have really put this into action, including Dean Schillinger with diabetes management and Darren DeWalt in North Carolina with hypertension and heart disease. People are indeed beginning to do this and are finding that it’s extraordinarily helpful.
Helen: I know you’re a researcher, and that’s a large part of the work that you’re doing. I appreciate and I get that sense of breaking this down. Is there a way to measure or quantify this and do it in a consistent way so that we know more about those literacy demands in healthcare?
Rima: In part, we’ve done that. I worked, as I mentioned, with folks from the adult education sector. This is part of what had been the National Center for the Study of Adult Learning and Literacy, a publicly funded center. We produced training materials for the adult education sector. We focused on health literacy.
We focused on three different aspects, each of which relates to health disparities. The first is managing chronic diseases. The second is screening and early detection, or what we call prevention. The third aspect is access to care or navigating the health systems.
For each of those three very important health areas, we produced charts and concrete examples of how to break down the variety of activities. We produced a full set of materials for continuing education for adult education teachers – designed as a five session program with time in between to try out lessons in class. This material is available free and can be downloaded by anyone at www.NCSALL.net. It’s also available on my website at Harvard, www.HSPH.Harvard.edu/healthliteracy.
Helen: We will also be having that information on the Health Literacy Out Loud podcast website with this podcast.
I’m getting the profound sense from you that healthcare, health communication and health understanding is really about the interaction between anyone who communicates, like the providers or public health people, and anybody on the receiving end. That’s not quite the same health literacy definition I know. Tell me more about how you would frame this within the definition of health literacy.
Rima: Helen, I think you just did it very well. You highlighted what the IOM (Institute of Medicine) report highlighted as well. Health literacy does not reside in individual skills. Health literacy really needs to be thought of as an interaction.
I might be a very highly literate person, but truth be told, if you give me a physics text and test my comprehension in regard to that physics text, I’m not going to come across very well. It’s been too long that I ever paid attention to issues of physics. I was never very well schooled in it to begin with.
If the text is difficult, no matter what your skills are, they’re not going to show up well. Literacy has to do with the interaction of the demand side and skill side. I think that we really do need to re-examine our definition of health literacy. There’s too much emphasis on the skills of individuals and not enough emphasis on the demand side and expectation side.
Helen: That’s fascinating. I love to see that. I almost see that like an equation with the demand side and the skill side on one of those balance scales where they have to balance each other out. Is work being done to alter that definition to include this more interactive and inclusive perspective?
Rima: I think so. I think people tend to skip over that in the IOM report, so it’s incumbent upon us to highlight that over and over. I know that you have a more balanced definition of health literacy on your website. I think we need to speak out about that. We need to have a bit of a movement to modify the existing definition of terms so that we do understand, as you pointed out, that there is a balance we need to pay attention to.
Helen: Thank you for mentioning my definition. I have been using this for years, and it probably comes out of my core in clinical practice. My definition has not been accepted by anybody else but me, I don’t think.
The way I frame health literacy is that it has to do with mutual understanding. I say that health literacy happens when patients, or anyone on the receiving end of health communication, and providers, anyone on the giving end of health communication, truly understand one another.
At that point, when I’m presenting in person, I actually lace my hands together to show that mutual communication and that no one side is either more at fault, more to blame or more powerful than the other. We are all in this one together.
Rima: I’m totally supportive of that. Wonderful.
Helen: Thank you. I don’t think this definition has ever taken off. I’m not a researcher. I don’t know if it’s quantifiable and measurable, but it certainly gets to the core of why I feel so passionately about health literacy.
From here, gaze into your crystal ball. Where would you like to see all this going?
Rima: I’d like us to fill in some of the gaps. For example, a good deal of attention has been paid to written materials and reading skills. Literacy, of course, contains five core components. Reading is only part of it. There’s reading, writing, oral exchange of listening and speaking, and of course, numeracy.
I think that the field is only now beginning to venture outside of the initial focus on reading, writing and materials to really look more closely at the oral exchange and to include and understand the demands that have to do with numeracy.
Numeracy includes the quantitative skills of adding, subtracting, multiplying, dividing and measuring that we’re asking people to do all the time. Also, numeracy incorporates an understanding of the mathematical concepts that we expect people to grapple with.
Second, I know that a number of new fields are now being more attentive to health literacy. You’re seeing articles that have to do with surgery, dentistry and mental health. What’s lagging behind, quite frankly, is my profession of public health.
I think that we need to be more attentive to the assumptions and demands that we make. Some of those have to do with disease prevention, early screening and detection, and messages that we provide people hoping that they will take action based on information. I think we need more coming in that area as well.
Finally, the missing element is that we need to have a clear understanding of what will bring about improvements and how to make change. We need to have good studies of the kinds of changes that are needed and recommended. Once they are under scrutiny and we know what works and what does not work – then will improve the situation.
Helen: We’ve been talking a lot about the deconstructing. What about the barriers in healthcare? What about that environment in which this is not taking place? Talk about that a little bit, please.
Rima: We’ve been looking at the health literacy environment of social service agencies as well as hospitals and health centers. Actually, we developed a workbook available for free online at the two sites that I mentioned earlier. This workbook helps people understand that any physical space may also use spoken or written words, and those words can sometimes get in the way.
We’ve developed a process that enables people to enter a facility, walk about and look about. They are able to examine signage, forms and paperwork. They can see the way people talk to one another and the words that people use and begin to assess the demand that these facilities are making. This process determines whether or not the use of the word helps you find your way and accomplish your tasks or gets in the way and erects unnecessary barriers.
Helen: I’m thinking again about your dentist who switched from gum to tissue. That could be the most befuddling of messages, looking at that environment. It just is striking me what a barrier we can put into place without even thinking about it.
Rima: Wonderful. It’s like a sign that says “Nephrology unit this way.” We know that nephrologists and all the staff who work with them know where they work. The poor patient with the kidney disease may not know that that sign is important to pay attention to.
Helen: You’re doing such great work and just bringing our awareness to this. I really thank you for being such a leader in making this message so clear about the work we have ahead of us.
Rima: Thank you. It’s an absolute pleasure.
Helen: Wow! I learned a lot, and I hope you did too.
Health literacy isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you are there, you’re welcome to sign up for the free newsletter, What’s New in Health Literacy Consulting.
New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find more information about each episode along with important links, such as the ones that Dr. Rudd mentioned today, at the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.
Did you like this podcast? Did you learn something new? I did. If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.