Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month, author of Health Literacy from A to Z, and host of the podcast series, Health Literacy Out Loud.
In this podcast I talk with someone very special to me—Archie Willard, a man I often refer to as my Health Literacy Hero. Archie was an articulate, ardent, advocate of health literacy. He organized health literacy conferences, participated in health literacy panels for the American Medical Association and the Joint Commission, and was a featured speaker at health literacy conferences nationwide. Archie also did not learn to read until he was 54 years old.
This podcast is a classic, first broadcast in 2008. Archie died several years later. To me, his perspective as a “new reader,” someone learning to read as an adult, is as important today as it was then. Listen as Archie shares his views about health communication.
Welcome, Archie. I’m just delighted that you’re joining us on this podcast.
Archie Willard: Thank you, Helen.
Helen Osborne: I’m delighted that you’re part of this podcast because you said you would love to be able to share with the listeners of Health Literacy Out Loud what it’s like to be someone who struggles to read.
I don’t know what that’s like. Reading has always been easy for me. But I’ve heard this from you and want others to hear what it’s like when people struggle to read. Can you tell us a bit about that?
Archie Willard: When you’re first starting school, all of a sudden you realize that you’re a little bit different because you struggle with the written, unspoken language.
Sometimes you’re left out of things just because of what you can’t do. You always feel like you’re behind and you feel that you don’t have the right to participate, be involved or speak out, so you don’t build self-confidence. Your development is very different than other children.
Helen Osborne: I remember you telling me some stories when you were in first grade and you started school so excited about school. But when you realized that learning came hard, that’s when you started to feel a little different.
Archie Willard: That’s exactly true. Before I started school, I was very excited. I had two older sisters and we had a dog and a backyard full of friends. I could count to 100 before I started school and say all the letters of the alphabet and nursery rhymes. It was just expected that I was going to do well in school.
Helen Osborne: But it was hard for you.
Archie Willard: After the first reading class, it seemed as though all the rest of the students could take these letters and learn them together and make a sound of a word. To me, I knew all the sounds of the alphabet, but I just could not blend these sounds together and come up with the words like they were.
I just felt very distant from the rest of the people. I just felt I was different. It brought a sad feeling. You were trying, but things just didn’t work out.
Helen Osborne: I since know from many of our conversations that you found out later in life that indeed you have severe dyslexia.
Archie Willard: That’s correct.
Helen Osborne: That was the root of what all this was about.
Archie Willard: Because of my inability to read very well . . . I was a sight-reader and knew the words by sight. I always struggled. There came a time when the factory I worked in was closing up and I needed a job. I had some friends that had connections to an insurance company and they got me a job to work as an insurance adjuster. I needed to know how to read and fill out forms.
At that same time, I also read an article about Bruce Jenner, who was an Olympic champion back in 1976 in the decathlon, that he was dyslexic. His story sounded so much like my life.
Consequently, I just couldn’t be satisfied until I was tested and found out I was very dyslexic. I went from there, I guess, in life to try to deal with it.
As I grew, I learned a lot about it. I also had a deep desire inside that I wanted to help others that had similar problems and encourage them not to give up.
Helen Osborne: At that point, you did learn to read.
Archie Willard: Exactly. I went to a tutoring program and my tutor worked with me. She actually acted like she was an insurance claim. She would role-play.
What she did was she gave me the confidence to be able to function on the job. As I functioned, the more confidence I got and my selling got better. My reading got better. I did really well.
Helen Osborne: You are able to read now. I know you and I email back and forth.
Archie Willard: Right. I wouldn’t say I’m a great reader, but I have improved. My life has become a lot better just because of going through all these experiences and understanding what my problem is.
Helen Osborne: I think that’s a lesson for many of us. We all face challenges of some varieties, and to understand what that problem is and to do all we can to overcome it and move on from there.
I want to askyou about health and what it’s like to struggle to read when you’re dealing with health information. What are some of the struggles and what are some of your strategies?
Archie Willard: When a person does not have strong reading skills, you go into a doctor’s office, a clinic or a hospital, there’s always paperwork there automatically handed to you. Someone has it and says, “Fill these things out.”
You actually take a step back in your mind. You actually have fear of, “How am I going to spell this word? Am I going to be able to write?”
Helen Osborne: Are you talking about that health history that you get when you go to a new provider? Are you talking about forms or booklets, or is it all of the above?
Archie Willard: All of the above.
Helen Osborne: So any situation that deals with the printed word.
Archie Willard: Exactly.
Helen Osborne: You’re there as the patient with other things on your mind, obviously. That’s why we all are there as patients. But you also are worried about what challenges you face with the reading, writing and spelling.
Archie Willard: Right.
Helen Osborne: How has this affected your healthcare?
Archie Willard: Some people deal with that in different ways. Some people just say they understand because they don’t want to have to go back and ask and look like they’re a dummy or feel like a dummy. Some people will ask questions and search for answers.
A lot of frustration starts to build up inside of a person. It just keeps building and building as you look at the form or you get asked questions that you don’t quite understand or you don’t understand.
When you have questions and things you wanted to ask, by the time you get to the doctor or other professionals, you’ve lost your train of thought. You get lost in the shuffle.
Helen Osborne: You get lost in the shuffle. You may never even get to the point of why you were really there, I’m wondering. Is that right?
Archie Willard: That’s correct. There are many times I’ve walked in and maybe I’ve had three or four questions, and maybe I got one or two answered. As I left the office, there were at least two questions that I didn’t even get asked.
It seems like the environment is not, you might say, to encourage you to ask questions. Sometimes you feel like you’re being rushed in and rushed out. Sometimes you feel like you got shortchanged on your medical experience.
Helen Osborne: I know what it’s like to be rushed in and rushed out of healthcare. I think that’s happening to probably most of us today. But when you’re really grappling to understand and when you missed asking some of those very important questions, it must be pretty scary to leave the office.
How can we as healthcare providers, health communicators, librarians and health educators of all varieties and communicators help people who struggle to read?
Archie Willard: One of the things we need to do is speak out and say that there are people like us and we are a larger number than most people realize.
Helen Osborne: When you say “we,” you’re talking about adult learners. Is that correct?
Archie Willard: Exactly.
Helen Osborne: People who have learned to read as an adult.
Archie Willard: Yes.
Helen Osborne: For adult learners, one of the strategies might be to speak up and say what? What would those words be?
Archie Willard: As an adult learner, we need to speak up and say that we have difficulties reading brochures and sometimes our comprehension to the medical language is not always understood. We need to be spoken to slowly and use living room language.
Helen Osborne: The living room language?
Archie Willard: Yes.
Helen Osborne: You need to be speaking up and letting your providers know that this is a challenge, and asking them to speak slowly and in those living room languages, or everyday words.
Is the whole burden on the adult learner to speak up, or are there some ways that the health provider can help?
Archie Willard: It needs to be a collaboration of both. Of course, the medical provider is really sitting in the driver’s seat, but we need to tell them to slow down or we don’t understand, and we need to develop the confidence.
Sometimes we have given them too much authority or prestige that they’re the final answer. In all cases, they’re not. If we’re not given the opportunity to express ourselves, then they sometimes are misled in the conversation.
Helen Osborne: You talked about how it is a collaboration, too, so I’m hearing a large burden on your part of all those things you need to do. Being scared, sick and in need of healthcare is hard enough. I wonder how we can help.
Archie Willard: As adult learners, in Iowa, we have a group called The Iowa New Readers. We have had conferences, three health literacy conferences, and we have partnered with the Iowa Health System.
This is a unique partnership. They have listened to us with a good ear. They have shown us their forms and we have looked at their forms, and we’ve told them the things that we struggled to understand and we struggle with. We’ve also told them the good things about the forms. We worked together to try to make these forms more simple and more understanding.
Just the fact that we’ve had these meetings, this has brought the professionals . . . they look at us as real people and they know that we’re out there.
Another thing we have done is we did the walkthrough of one of the biggest hospitals in Iowa. We looked at the signs and the different directions of how to get around. We made suggestions.
I think in some ways we haven’t changed a whole lot, but we have made a few simple changes that are very beneficial for people just to get around in the hospital.
Helen Osborne: I think that’s one of the reasons you are my hero. You’ve been one of the leaders of doing all this. I recall you saying you’re part of your hospital’s patient and family education committee. Maybe it is that you co-chair that. I know you help review the materials, and these walkthroughs sound like such a great idea. You’re helping health providers of all varieties in so many ways.
If you had a wish list of what would happen in the future to make things even better for everybody, what would be on the wish list?
Archie Willard: I think that, when possible, health providers should listen to the voices of the adult learner and work together with them.
There was a brochure put out, the Ask Me 3. These are questions that a person should be asking and should be addressing in an office visit.
It’d be really good if doctors could learn how, practice and become very efficient at what they call the teach-back. When he gives directions of how you’re supposed to take your medicines or the instructions, the person he gives them to repeats them back to make sure that the person has the instructions right.
I’m a person that when I’m around people and I hear jokes, I tell them back and people say, “How do you remember all these jokes?” When I hear a joke that I like, I repeat it back to myself. That’s how I do it. This is the same thing as the teach-back.
Helen Osborne: You say the joke back to yourself?
Archie Willard: Right. Quietly, I say them back to myself. Then I get it locked in my mind. If I don’t, I lose the joke.
Helen Osborne: I should use that technique to remember people’s names. That’s always hard for me to remember. How wonderful to just put it in terms that we can all understand of what would really help. That’s a great example of the teach-back technique.
Archie Willard: I used that the other day when I was down to Iowa City at the medical school. We were talking about the teach-back and I used that example of telling jokes.
Helen Osborne: Did they all laugh?
Archie Willard: Yes. They got a kick out of it. I think they thought it was a good point.
Helen Osborne: It’s just so human. The strategies you’re talking about are just so human. Indeed, that’s what healthcare is all about, the human-to-human interaction.
No matter what we’re struggling with, what challenges we bring, what strengths we have, what information we know or need to know, we all need to remember the humanness of what this is about. That’s what you’re addressing. I thank you for that.
What surprised you the most about your journey as an adult learner going through healthcare?
Archie Willard: The thing that’s different to me is the literacy field doesn’t listen to the adult learner like the medical field has.
I truly believe that the medical field, AMA, the Joint Commission and some of these other groups are really trying to make health literacy more understandable and they’re trying to understand it. They realize there’s a very good connection between health literacy and patient safety.
There is an effort, a good, strong, solid effort out there, to make things better. I think as years pass by, we’ll make some good progress.
Helen Osborne: That’s great to hear. I thank you, Archie, so much for sharing with all our listeners what it’s like to struggle to read and to overcome some of those struggles.
Thank you for listening to Health Literacy Out Loud. As we just heard from Archie Willard, health information can be hard to understand. For help clearly communicating your message, take a look at my bookHealth Literacy from A to Z, especially chapters 21 and 28 that have much more information about literacy and plain language. You also can contact me directly at firstname.lastname@example.org
HLOL podcasts come out every few weeks. You can get all the episodes automatically by subscribing for free at www.HealthLiteracyOutLoud.com. Or find us in iTunes, Google Play, Stitcher Radio, or wherever you get podcasts.
Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world know why health literacy matters. Until next time, I’m Helen Osborne.