Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations about health literacy with some really remarkable people.
Today, I’m talking with Dr. Marin Allen, who is the Deputy Associate Director for Communications and Public Liaison and Director of Public Information in the Office of the Director at the National Institutes of Health, or NIH.
Marin has more than 30 years’ experience in all aspects of public communication. Her many accomplishments include being a full professor at Gallaudet University, working as a media specialist for the White House Conference on Aging, being a faculty member at the University of Maryland and winning two Emmy awards.
Marin now serves on the National Academy of Medicine’s Roundtable on Health Literacy and is the NIH liaison to the Health and Human Services Workgroup on Health literacy.
Dr. Marin Allen: Thanks so much, Helen.
Helen Osborne: Wow, what a bio. You’ve done so much.
Dr. Marin Allen: I’m nowhere near finished.
Helen Osborne: Let’s hear about it. I really want to get to the core of this about why public communication matters so much.
Dr. Marin Allen: I think it’s fundamental to the human condition. We do all of this work and discovery, and we are constantly looking for new and better solutions to the way that we do things, particularly in the area of health.
Unless that’s put in a form that is easy to access and something that’s useful for the public, we need to be engaged in making that as easy a process as possible.
Helen Osborne: Easy communication, is that what is often referred to as plain language?
Dr. Marin Allen: Helen, I actually prefer clear communication.
Helen Osborne: Really? How come?
Dr. Marin Allen: I think that plain is very often colorless connotatively, but I understand the purpose of it and I understand why people adopted it earlier on.
I think clear communication means that you’re actually creating that synapse between the person who’s offering the information and the person who’s receiving it.
It goes back to fundamental communication literature that explains that we’re constantly in the giver/sender mode, we’re changing roles and we’re constantly communicating, particularly in oral communication but even in written communication.
Helen Osborne: That’s interesting how you talk about the two sides of that. I like the way that you worded it with the giver and the sender.
Since my work and world has always been in healthcare, I talk about providers or anyone on the communicating end, and then patients or the public, anyone on the receiving end.
You put it in even more general terms than that as far as givers and senders. Is everybody both?
Dr. Marin Allen: I think we have to be, and this is probably going to sound a little strange, but we have to be listening even when we’re writing.
We have to be hearing what’s being asked of us by people who aren’t actually asking it at the moment, such as “What does this disease condition mean?” or “How can I be affected?”
We need to hear those voices as we’re creating the materials, I think, and that’s still on the one-on-one basis. But it also relates to how we think about populations and groups of people in various settings. We have to be mentally where they are when we are developing things that answer their questions.
Helen Osborne: You worked at Gallaudet. I know that’s a university for people who are deaf. I’ve heard you talk about communication and communication disorders. Can you include for our podcast listeners who you are talking about and how you are thinking of them?
Dr. Marin Allen: About one out of six people in the United States has some form of either communication difference, for example, a deaf person who uses ASL, or a communication disorder, like aphasia or dyslexia.
What happens is if we exclude one out of six people in how we create materials and information, we’re not communicating at all with those individuals, who are very often in real need of that information because it may not be being provided by anyone else with attention to the needs of that population.
It also works in the part where we have provider and patient or provider and family communication. If someone has a difference or a disability, the provider isn’t always really aware of ways to communicate. I mean just simply being able to understand what kind of signals they’re getting from someone.
One of my favorite linguists, Evelyn McClave at CSUN, describes the head nod internationally. She’s an expert in gesture. When we nod our heads, it does not mean we are agreeing or that we are understanding. It means we are continuing to listen.
Even the side-to-side thing that we consider to be a no can be a different form of that continuing to listen. We’re paying attention.
When a physician or another health provider looks at someone, gives them information and then sees a head nod and goes on, there has not been a communication.
I think that the whole teachback that Dean Schillinger worked with, the notion that we have to be sure that we’ve confirmed understanding, is a solution to that issue. But you’ve got to know it’s an issue first.
Helen Osborne: I want to go back to a few different issues you were raising when you were talking about communication differences, disorders and disabilities.
I know you especially have a lot of experience with people who are deaf. Now you’re talking about gestures and that visual language.
Other than that gesture of what we might assume is a head nod or a headshake meaning yes or no, what are other ways communication can be misunderstood?
Dr. Marin Allen: Here’s another example from a communication disorder. A person who stutters may be simply overwhelmed by someone who is trying to simply give them information and not be given an opportunity to ask his or her question.
This is not a criticism of providers. This is something that has not been part of the whole educational system for them.
Helen Osborne: I’m so glad you raised that issue about someone who stutters. I can picture that situation. I’ve probably been in conversations with people who stutter. It takes a while. If I’m in a rush, I might be thinking, “I’m going to not ask so many questions because everything is taking so long.” Is that what you’re talking about?
Dr. Marin Allen: Yes, and also assumptions about what you should or shouldn’t provide for somebody with a disability.
It’s the National Academy of Medicine. I have to get that right now.
Helen Osborne: It was the Institute of Medicine.
Dr. Marin Allen: Yes. We just held a combined workshop with the Roundtable on Health Literacy and the Roundtable on Health Equity and Health Disparities on people living with disabilities.
Something that really struck me in that discussion was something Susan Aarup said. She’s from ADAPT, which is an advocacy organization out of Chicago. Her bottom line as a person with disabilities was, “Ask us what we need. Tell me what I want to know, not what you think I ought to know.”
I think that’s such an important message for thinking about, with any group of people, when we’re trying to share health information and health services. We really need to ask people what they need and tell them what they actually ask us for.
Helen Osborne: That sounds like a real issue of respect. We were talking about written communication and spoken communication and, either way, really listening to our readers. That sounds as though all of these strategies are a way to respect our readers.
You talked about gestures. Are there certain ideas you have about how we find the right word? I’m not talking about just something with a shorter number of letters in it or less syllables.
Dr. Marin Allen: Everyone has things that they are still struggling with. One of the things that I really have always thought was odd is the dismissive way that, for example, when people are creating documents, they say, “We’ll let somebody wordsmith it later.”
Wordsmithing is the work. But it’s the notion that we need to find the right word or the right concept just to simply say, “That word’s too hard for ‘them.’” I think whenever you get to “them” in a language, you’re lacking that respect.
The word that you’ve chosen isn’t clear enough, and if it isn’t clear enough, there are some really simple strategies for either stopping for a second and defining it, or putting it in parentheses or in apposition so that you say what the definition is between commas after the word.
Helen Osborne: You sound like you’re talking about being clear in our communication when you find that shorter word. That’s a really interesting concept. We’ve talked about that quite a bit, those of us doing this work in health literacy and, as I used to call it, plain language, but maybe call it clear communication.
I’m also interested in the role of respect when we choose our words. I know I have strong feelings about a few words.
Dr. Marin Allen: I actually hadn’t thought about talking about it that way until you asked me the question earlier, but it goes to listening. It’s the same notion of cultural respect. It’s the same idea of meeting people where they actually are, whether you can actually go there or you’re at least thinking it through in the context.
One of the things that folks keep talking about and that we’re trying to work on is you’ll hear people say they want to get trust or that you have to earn trust.
Helen Osborne: I would think so. It’s not just given to you.
Dr. Marin Allen: People try to figure out that they’ll get trust just because they’ve branded something in a particular way.
Helen Osborne: In your case, it’s NIH. That’s very famous and well-known.
Dr. Marin Allen: Right. For us, we have to earn that trust by actually producing something that’s helpful, useful, credible and correct.
Helen Osborne: Can I give you an example of some words that I struggle with that don’t get my trust right away?
If somebody is talking about a disease, writing about it or talking to me about it, particularly if I happen to have that diagnosis or disease, I hate it when they use warlike terms like “battling” or “fighting.” I’m just not a warlike kind of gal.
If somebody uses that or talks about someone who’s a survivor, and these really intense words like that, I get so turned off that I can’t even go any further. It’s like somebody put their views that this is a battle on my view.
What are your views about that?
Dr. Marin Allen: I think that’s a really important observation, Helen. There’s an area of interest for us in how we communicate health and science in regard to public trust and things like disease mongering.
Helen Osborne: What’s that?
Dr. Marin Allen: It’s “everything is a disease,” even natural processes, like hair loss, for example.
We put up a website for talking about some of these issues that are helpful to people who are writing or who are journalists to talk about language that will include the audience in a respectful way. For example, not stigmatizing people, not blaming people, not blaming the victim and issues that have to do with how you talk with people about their disease.
We had invited a master storyteller, John Spellman, to come because everybody is talking about storytelling. This was about five years ago. John had done a project at CERN to try to explain the supercollider and help scientists explain it in human terms.
We had him come and do a workshop with some of our writers. He talked about creating the environment of telling a story, which is what a lot of us do as we’re trying to develop these pieces.
He said, “You’re masterful at setting the tone, and there’s an agreement between the audience and the storyteller. If you pick even one wrong word, it jars you into losing that trance of listening to a story. What happens is you’ve engaged me.”
Then you say something like I did at the beginning of the call, “One out of six Americans has a communication disorder.” There was a purpose for that when we were talking about it, but we have a tendency to toss in information that takes us out of that storytelling mode, and that’s something that is also a problem for engaging other audiences.
Helen Osborne: Wow, there’s so much. We’re talking about words, the process, respect, oral communication and written.
Marin, you are just a wealth of information. I am so glad you continue to champion all of these causes. You talked about some work that NIH is doing and some resources. We’re going to have that on your Health Literacy Out Loud web page.
Listeners, you can keep learning more. But for right now, Marin, I just want to thank you so much for doing all that you do to encourage clear communication and for sharing it with us on Health Literacy Out Loud. Thanks, Marin.
Dr. Marin Allen: Thank you so much, Helen.
Helen Osborne: As we just heard from Dr. Marin Allen, it is so important to clearly communicate with the public. But doing so 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, feel free to sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.
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Until next time, I’m Helen Osborne.