Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.
Today, I’m talking with Dr. Iris Feinberg, who is the Associate Director of the Adult Literacy Research Center at Georgia State University. She is a research assistant professor in the Department of Learning Sciences, and a health literacy researcher.
I know of Iris’s work through postings she made on the health literacy discussion list. I was especially intrigued with a link that she had to an easy-to-read booklet that she and her team created about COVID-19.
I am delighted that Iris agreed to be a guest on this podcast and talk more about the development and use of this booklet and share that experience with you.
Welcome to Health Literacy Out Loud.
Dr. Iris Feinberg: Thank you. It’s a pleasure to be here.
Helen Osborne: I consider my podcasts, as listeners may or may not know, to be evergreen. They don’t have a particular timeframe. They can be relevant at any time. But you and I are recording this in the middle of the COVID-19 crisis. It was an urgent need to get out information.
I wanted to talk with you a bit about how you got out a booklet so quickly to meet an urgent information need, especially for adult learners who may be struggling to read.
I think that those lessons, whether they apply to this virus that we’re dealing with now or to all other situations that will always crop up, have a lot to teach all of us on Health Literacy Out Loud.
Maybe we can start from the top. Talk about how you developed a booklet to meet such an urgent need of information.
Dr. Iris Feinberg: At Georgia State, we’re fortunate to have one of the CDC-funded Prevention Research Centers in our School of Public Heath. I happen to be a co-investigator on that.
We are in particular focused on a small community called Clarkston, Georgia, that is known as the most diverse one-and-a-half square miles in America.
Helen Osborne: Oh, really?
Dr. Iris Feinberg: Over the course of the last 20 years or so since there was a large wave of refugees coming into our country, tens of thousands of them actually settled into Clarkston.
Now the community is about 15,000 or 16,000 people, of which half are refugees from over 170 countries who speak 60 different languages.
Helen Osborne: Oh my goodness. Wow. You met them through your work through Adult Literacy?
Dr. Iris Feinberg: That’s correct.
Helen Osborne: Is it they’re just acquiring the literacy skills, the English skills?
Dr. Iris Feinberg: It’s both acquiring English skills and learning how to help folks who have limited English proficiency maneuver their way through their kid’s school, the healthcare system or a million other things that people need to do, like shop. To really try and help create and develop a culture in that community of culturally and linguistically appropriate access or materials.
Helen Osborne: That sounds like a huge task right there, just getting people through the struggles of everyday life when you’re coming from another land, speak another language or all the other factors going on in someone’s life.
Now we’re faced with this pandemic and there’s all kinds of information and misinformation out there about what to do and why we need to do it. It is really an urgent need of information. How is that different from your everyday communication and teaching?
Dr. Iris Feinberg: The difference is in the urgency, as you said. Normally, in research, when you’re creating materials, you have a focus group, for example, and you run things by your intended audience. You assess them and you iteratively create things. We didn’t have that kind of time. People were dying.
One of the challenges faced by this particular community is that many of the folks are frontline workers. They work in a warehouse, a grocery store or the poultry plants. A lot of them work in the poultry plants.
There are large families. On average, the families are five people and greater, living in very cramped, small quarters. When you have folks who are starting off with those limitations and don’t know who to trust for health information during this pandemic . . .
Everybody has a cell phone, but not everybody has internet access or knows how to Google things on the internet. Even then, in particular with this pandemic, there was so much, as you said, information, misinformation and conflicting information.
You’ve got folks who aren’t getting their information on the internet. They are getting word-of-mouth information from their friends and families. Because they come from so many different cultures, they have a lot of myths as well that they’re keeping with them, sort of their cultural myths.
For example, one of the myths going through the community was if you come from a hot country you can’t get COVID-19.
Helen Osborne: That got promoted in many places.
Dr. Iris Feinberg: Exactly. In speaking with the healthcare providers on a COVID-19 taskforce, they shared with us what many of these myths were and what their concerns were.
We started writing single-page documents on how to wear and clean a face mask, for example, and that you don’t touch the front of it or touch the back of it.
Helen Osborne: Can we go back to the beginning? We had this urgent medical need, we had conflicting information and you have the most diverse community I can quite imagine. How did you start this project?
I know you usually have your methodic way of doing it. How did this idea just germinate? Like, “We need to do it”? Did you just start doing it very differently than usual, or did you think about it and then did you focus on, “Let’s start correcting this information”? Where did you begin?
Dr. Iris Feinberg: That’s a very good question. On this health literacy listserv that you were referring to earlier . . .
Helen Osborne: We’ll have a link at the end of your Health Literacy Out Loud web page.
Dr. Iris Feinberg: Great. One of our health literacy colleagues posted a note that she was in search of COVID-19 materials for low-skill readers, for adults with low literacy. It sparked an idea in me to look at what was out there. Let’s go see what’s out there.
I got in touch with the folks over at IHA.
Helen Osborne: The Institute for Healthcare Advancement.
Dr. Iris Feinberg: Correct. Thank you.
Helen Osborne: It runs the health literacy discussion list.
Dr. Iris Feinberg: Right. They were pulling together a library, so having people send them a whole bunch of information, whatever they have.
Helen Osborne: This was all on COVID-19?
Dr. Iris Feinberg: It’s all on COVID-19, only on COVID-19.
I scored the readability levels using a few different techniques just to get a sense of, “Were they generally written for high-schoolers or 12th grade and above, or were they generally written as 3rd grade level and below? What was the general sense?”
There was not a lot that was written at the 4th, 5th or 6th grade level. We know that one in five Americans reads at the 4th, 5th or 6th grade level, whether or not they have a high school diploma, they’re a refugee or their family is 17 generations in the United States.
Helen Osborne: It’s really interesting to me that you responded to an identified need that’s out there in a forum where we’re exchanging information about health communication. Then you looked at this body of work, assessed it and you found an information gap there. You also knew that something had to be done right away.
Is that what spurred you on to get started?
Dr. Iris Feinberg: Yes, because people were dying. It was just such an emergency, so I really focused for about a week.
We wrote a couple very simple documents and put them on our research center’s website with the hope that educators, community workers and folks who are in the healthcare space would go and grab that information, download it, print it and give it to patients who might need things to be written in such a simple way.
Then we said, “Let’s create a library of all of these materials that we found,” or at least a large sample of the materials.
Helen Osborne: Of the materials that are at an easy-to-read level?
Dr. Iris Feinberg: Correct. We created a library of materials that were written, we like to say, “easier,” “harder” and “medium.” We picked easier and medium materials. Again, sending out the word in the community through a bunch of different sources that we had this library of materials on our website for healthcare providers, adult educators, community organizers, people who dealt with folks with low literacy skills.
Helen Osborne: It sounds like really bringing in the community a lot. You saw what was out there, you identified where you wanted to go in this easier- and medium-to-read level and then you brought in the community.
I just want to tell listeners that your booklet, and we will have a link to it, is called “Answers to Coronavirus Questions.” It’s terrific.
Can you take us through some of the steps? If you could, be thinking about lessons learned that might apply in other situations, too, and how other people can start developing materials, urgent topics perhaps, that meet the needs of readers at that level.
Dr. Iris Feinberg: Absolutely. We were approached by the COVID-19 taskforce in Clarkston to create a myths and facts page for them, a handout in the community.
When I saw the list of myths, I said, “First of all, there’s no way you can put all that information on one piece of paper.”
Helen Osborne: The myths are like “it’s going to go away in the hot weather.”
Dr. Iris Feinberg: Yes, and things like home remedies can treat it, black people can’t get it, old people get it but not young people, and women get less sick than men.
There were about 10-ish or so myths that we needed to address, thinking about how you write things in a health literate manner for adults with low literacy.
Helen Osborne: When you’re refuting untruths or uncertainties.
Dr. Iris Feinberg: Correct. You start with, “We need a lot of whitespace on this paper. We need to use simple language, plain language, no jargon. We need to have some kind of graphical image that’s simple that speaks to what the topic is. We need to make it action-oriented.” Those are the key things in writing health literate materials for adults with low literacy.
Helen Osborne: I’m just repeating this. It’s the use of whitespace, so it’s really the layout. It’s using simple wording that people can understand and not the jargon terms. You’re using images as appropriate, and you want it action-oriented. Those were your guiding principles as you went through creating this document?
Dr. Iris Feinberg: Correct.
Helen Osborne: Then on top of it, you knew that the topic needed to be making sense out of what people are just hearing by word-of-mouth or what they believe.
Dr. Iris Feinberg: Correct. One of the important things that we also did throughout the first 10 or so pages of this booklet was we repeated phrases in the exact same way from page to page. This isn’t a creative writing exercise.
Maybe we wanted to say, “Doctors and nurses can treat coronavirus.” Let’s just say that’s the sentence we wanted. We repeated that sentence on every page where it made sense.
Helen Osborne: Also, I just wanted to tell listeners that you’re talking about a 10-page document, but it is not a 10-page document filled with text from top to bottom. The sizing of your document is different, too, right?
Dr. Iris Feinberg: It is. What we decided to do was to make this the size of a picture flipbook. Remember the days when we used to print our photos and they were 5-by-7? We would put them in a little booklet and carry that booklet around to show people about our vacation. We thought that was an appropriate size.
The font size was big enough, but it wasn’t so big that it looked childish.
That’s something else when you deal with adults who have low literacy. They have to be high interest materials, of course, written in low literacy terms, but also something that an adult would want to pick up and read. If not, they’re not going to read it.
Helen Osborne: You’ve talked so much about the design and working with the community. Could you share a few examples? I have the booklet right here if you want me to share some examples. I just think it was interesting.
Dr. Iris Feinberg: Sure.
Helen Osborne: I know you’re dealing with myths, and I was intrigued. I’ve never seen this structure quite this way. You didn’t call it “myths,” because that’s a jargon term, right?
Dr. Iris Feinberg: Right.
Helen Osborne: But in one of these pages, you said, “This is what I heard . . . God will protect you from getting it or will keep you from getting very sick.” That’s how you presented the myth. Then you have a little picture that goes along with it.
Then in larger font, at least in the version I printed out, it says, “Doctors and medicine can treat coronavirus. You can help yourself and others by calling your doctor if you feel sick.”
Is that an example of how you worked with the language people were really using and then presented the medical information?
Dr. Iris Feinberg: Yes. It’s interesting you picked the most challenging myth to answer. The one thing you don’t want to say to somebody is you don’t want to refute what their beliefs are. There goes all of the cultural competence stuff. If you say, “I don’t believe in what you believe in,” then people aren’t going to think that you’re credible.
Without intentionally acknowledging that, “Yes, you may have the belief that God cures diseases,” we just said, “We’re not even going to deal with that. We’re just going to say what it is we want to say: Go see your doctor if you feel sick.”
Some other myths were a little easier to write about. For instance, if you come from a hot country, you won’t get it. I think the response we had in there was something like, “People from all countries can get it.”
Helen Osborne: You’re doing it in a very considerate, respectful way.
You talked about so many principles you put into place. How has this booklet been received?
Dr. Iris Feinberg: I wanted to just add that the last three or four pages are not myths. They are issues that the community wanted us to address.
One of them, for example, is “How do I wear and clean a face mask?” or “What do I do if someone in my house is sick? What should I do? What should the sick person do?”
The last one I think is about going to work. “What do I do when I get home from work?” As I said earlier, many of these people are out working. They don’t have a choice.
Helen Osborne: You don’t even put in there to stay home?
Dr. Iris Feinberg: We put a lot of “stay home” in there, but if someone has to go to work, they’re going to work.
Helen Osborne: We’re nearing the end of this podcast. I hope people will go look at this booklet, I think it’s terrific, and see for themselves what you’re doing.
What lessons have you learned about communicating in a crisis, in an emergency, with such a diverse audience, and do it in ways that are medically appropriate? What can you share with the rest of us for the next time we face a situation like this?
Dr. Iris Feinberg: We wrote all the text and then we gave it to the physicians who are part of the community and said, “How did we do here? What did we miss? What’s right? What’s wrong?”
They provided us with a few edits and asked us to add another one or two myths in there to make sure it was as complete as possible.
Then we just printed it and distributed it. Now in terms of distribution, we only printed it in English to start with. We gave copies to the medical clinics and to about 12 community health workers. Everybody loves it. It’s simple. They understand it.
A community health worker, somebody who lives and works in the community, who is not a registered nurse or physician but they’re trying to help guide their community members, their peers, to do the right thing medically, they understood the answers to the questions. That was really important to us.
Helen Osborne: Of course, in health literacy, we always talk about getting feedback, bringing in your users and all of that part. You’re a researcher, so you’re used to doing it much more methodically and building toward this crescendo.
What I heard from you was, “We just printed it.” You printed it, you gave it out and now you’re dealing with it. Sometimes things can happen in a different order.
Dr. Iris Feinberg: That’s right.
Helen Osborne: Boy, I learned a lot listening to you about approaching this process. I bet our listeners did, too. Whether we do it on one health crisis that we’re all sharing and experiencing together, there are so many other health needs and health communication needs out there. I think there’s a lot to take from your experience. I thank you for that.
I also want to let listeners know that there’s a wealth of great information on the website for the Adult Literacy Research Center at Georgia State University. We will have that URL on your Health Literacy Out Loud web page, too.
Dr. Iris Feinberg: Great.
Helen Osborne: Iris, for now, I thank you for all you do, all your leadership, all your respect and wisdom in helping us all figure out how to communicate in a crisis and all the time. Thank you for being a guest on Health Literacy Out Loud.
Dr. Iris Feinberg: Thanks for having me.
Helen Osborne: As we just heard from Dr. Iris Feinberg, it is important to communicate with everybody no matter their language, their culture or their levels of reading skills. And to do this to meet important health information needs. But doing this is not always easy.
For help clearly communicating your health message, take a look at my book, Health Literacy from A to Z. You might be especially interested in Chapter 21, titled “Know Your Audience: Literacy.” It’s about people who are emerging or learning readers.
Health Literacy Out Loud podcasts come out every few weeks. You can get all the episodes automatically, for free, by subscribing at www.HealthLiteracyOutLoud.com, or find us on Apple Podcasts, Google Play, Spotify, iHeartRadio, RadioPublic, Stitcher and probably a lot of other podcast apps.
Please help spread the word about health literacy and Health Literacy Out Loud. Together, let’s tell the whole world why health literacy and clear communication matter.
Until next time, I’m Helen Osborne.