Helen: 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 with some amazing people. You will hear tips, strategies and other great ideas for clearly communicating your health message. Beyond learning what to do and why to do it, I hope that the people you meet inspire you as they inspire me to make a health literacy difference.

Today, I’m talking with Cecelia, or Ceci, and Leonard, or Len, Doak, a husband-and-wife team who I consider the founders or grandparents of health literacy. Their book, workshop, articles and all around wisdom and support has inspired many of us, myself included, to improve health understanding.

Ceci started as a commissioned officer in the U.S. Public Health Service. During her more than 20 years there, Ceci developed and led numerous health education programs. In fact, she received a commendation from the Surgeon General for her work in educating the public about cancer.

Len comes to health literacy via adult education. He was a volunteer for many years, tutoring non-readers in how to read. Len’s first career was as a Navy engineer. Among his many accomplishments, he helped simplify instructions for crews working on ships and submarines.

Together, Len and Ceci coauthored the award-winning book, Teaching Patients with Low Literacy Skills, which is now available for free from Harvard University’s School of Public Health website.

Len and Ceci work together in their not-for-profit business, Patient Learning Associates, Inc. Together, they have written guidelines for numerous projects that analyze the suitability of more than 2,000 healthcare materials in virtually all formats.

They have presented at more than 200 health literacy workshops across the country and around the world, and have trained over 11,000 professionals of all disciplines. Talk about making a difference! Wow!

Personally and professionally, Ceci and Len are my heroes. Thank you for talking with us, and welcome to Health Literacy Out Loud.

Len: It’s tough to be a hero.

Helen: You are my heroes. I love seeing you whenever we meet at conferences all across the country. To me, the two of you are the trendsetters, the groundbreakers, the people who got health literacy started. Do tell. How did all this begin?

Len: I guess the best way to say it is that our work in health literacy started with our marriage in 1973.

Ceci: I was in continuing education for physicians and allied health personnel way at the other end of the continuum from literacy. When I met Len and he told me he was volunteer tutoring people who couldn’t read and write, I said, “My heavens! How do people with low literacy skills understand medical advice? What happens when they go to the doctor?”

Len: I said, “Often, they don’t understand. They may pretend to understand to avoid embarrassment.” Of course, that helps fuel the belief of many doctors and nurses, “We don’t have any of those low-literate people in our practice.”

Ceci: That’s where we started.

The thing that’s important here is that people who don’t read well are not lacking in intelligence. As Roger Shuy pointed out, who is a reading specialist, “People in general make judgments about other people by the way they talk.” If they speak in broken phrases, like, “I done took what you told me to,” or “Them and those,” we sort of click in our minds, “This person isn’t very bright.”

What we’ve started doing is separating out some of the misunderstandings and misconceptions about literacy. People are not dumb. It’s a matter of skill.

Helen: How did this get started?

Len: My first student was a man named Alan. He was 26, married and had children. He had a good job as a machinist in a small town in upstate New York. He couldn’t read or write. He didn’t even know the letters in the alphabet.

He could sign his piecework as a machinist because somebody had taught him by rote how to write his name. He practiced it a hundred times. You could learn to write your name in Arabic backwards if you practiced it a hundred times.

I asked him, “How do you get by at work? Don’t you have to read blueprints?” Allen said, “Yes, but we don’t get them too often.” I said, “What do you do when you get them?” He said, “I steal a print and take it home. My wife reads all the dimensions, materials, lubrications, tolerances and so forth to me. I memorize that. Then I go back to the plant and make it.”

Was this man lacking intelligence?

Helen: It sure doesn’t sound that way.

Ceci: That was one of the first things when we started workshops and working with health professionals, clarifying this point. What we’re talking about is building a skill and helping health professionals work around the problem of literacy.

We’re not trying to solve the problem. We’re trying to manage it and work around the literacy issue so people can more readily understand. That means simplifying instructions.

Helen: That’s an important point. I like the way you frame it. It’s trying to manage it or work around it, not trying to introduce those literacy skills. As a health provider, I know that we don’t have time to deal with that when we’re in the middle of a clinical encounter. It’s just about how to work with that.

Ceci: The reading field is made up of people who have spent their careers learning the skills of teaching people to read. We don’t want to do that. We want to work around the problem so the patient walks out of the office knowing what to do and how to do it.

The definition of health literacy, which came out in the Department of Health and Human Services bulletin for 2010, is, “The degree to which individuals have the capacity to obtain, process and understand basic health information.” It’s not just a matter of reading. It’s also understanding and being able to process the information.

Helen: Thank you for that. Can I take some steps back with you, please? It’s 30-some years ago. You’re working with Alan. You two are newly married. You’re realizing that not everybody understands health information.

It’s quite a leap from there to what you just told me about a definition that’s in Healthy People 2010. A tremendous amount of work must have happened in that time from your very first awareness. How did health literacy get started as a field or discipline for study that people are really paying attention to? What happened in those early years?

Len: When we first started doing workshops, people were terribly hungry for a solution. The doctors, nurses, dieticians, nutritionists and other people who were on the firing line in contact with patients realized that the patients didn’t understand, but they were trained formally using college-level words.

They didn’t know how to cope with and manage this and make their message understandable and motivating to people.

Ceci: One of the first things we did was to look at the literature on health education and literacy. We found that there were only three professional papers written before 1979 on health literacy.

Dr. Pat Lawrence at the University of North Carolina did a research project on how many pamphlets or materials were available on diabetes in health literacy. This was in 1979. She found that there were only 12 publications with a reading level of Grade 7 or below, and 10 of those were on single-concept sheets that really didn’t stress very much about the behavior of the patient.

One characteristic that we noted as we viewed health instructions back in the early days was that the instructions followed the medical model of epidemiology, talking about the disease process, what happens as far as the body is concerned and so on. Then at the very end, it got to the behavior.

What we stressed in literacy was just the opposite. Start with the behavior. Don’t worry about whether or not they understand the disease process. The thing to worry about is whether they understand what to do when they go home.

Helen: You now have this new awareness. You see that there’s a problem. There’s scant little research out there. What happened next? How did this go from just an occasional person interested in this topic to really becoming a movement and discipline in its own right?

Len: It happened rather gradually and over a period of years, frankly. One of the things we did was test the reading and comprehension skills of 100 patients at a public health service hospital. Then we tested the readability level of the materials these patients were given and told to follow.

We found that there was a big gap. The patients, on average, read at the seventh-grade level. The materials averaged at the twelfth-grade level, a five grade level gap.

Helen: That’s huge!

Len: The study results were published in "Patient Counseling and Health Education," Vol. 2, No. 3, 1980. That began to catch attention.

Ceci: We did work for the division of hospitals for the Public Health Service. This was back in the days when the Public Health Service still had hospitals. The clinical directors were shocked.

We were invited to present papers at their clinical sessions, not just at their typical educational sessions. It was when we got into the clinical world that things really began to happen.

Helen: You started with some workshops and papers and assessing some materials. Tell us what happened next.

Len: One of the things we did to make it more meaningful for the participants in our workshops was to ask them in advance to send some of the materials in any mode of communication that they were using and found troubling, or that they were developing. We would give them feedback as to the strong points and weak points.

We began to develop a sense of what worked and what didn’t. We tested some materials that were sent in to us and decided that we would like to evaluate those with patients.

We visited a kidney dialysis clinic and arranged their permission to talk with patients about materials. One of the materials we wanted to test was diet. If you’re on dialysis, you have to watch your diet. You should eat red meat, and the instructions said you should avoid shellfish and poultry.

I asked a gentleman, “Fred, would you read this for me?” He read it. I said, “What’s it all about?” He said, “It’s about what you’re supposed to eat.”

Helen: That’s good.

Len: I said, “What do you eat for dinner?” He said, “I sometimes have chops or steak, but fried chicken is what I eat the most of.” I said, “Fred, what about poultry?” He said, “I never eat poultry! We’re not allowed to have that.”

Do you ever see “poultry” listed in the supermarket? No. They don’t sell poultry. They sell chicken or turkey.

Helen: That’s an example of a category word. When we in healthcare are communicating in that way, our messages are just gone. They’re not nearly as effective as we’re pretending they are.

When I first heard about health literacy, my awakening was in 1995. I was working in a community-based hospital in one of the poorest parts of Boston at that point.

I read an article in The Journal of the American Medical Association about health literacy and how many people have trouble understanding. I looked around at my population, clunked myself on the head and said, “Yes, these are the folks I’m working with.”

I didn’t need to replicate the research. I just thought, “There’s a problem. I get it. What can I do about it?” At that point, there was that one article, and I found exactly one book written by Doak, Doak and Root, your book.

I found that for the underpinnings, the bible and the fundamental for all the work that I did for many years thereafter, your book is just a tremendous resource.

Len: Thank you.

Helen: Can you tell us a little bit more about that book?

Len: It started, of course, from the workshops. Many of the people in the workshops asked, “Isn’t there a book where I can read about all this?”

We had people who had just gotten their masters in public health and education who said, “They never even mentioned readability issues to me. I’ve never heard of those things before.” After hearing that a number of times, we decided that we would try to put together, based on our workshops, a book that would be a reasonable, practical resource.

Helen: Your book is just a wealth of how-to strategies. Your book, Teaching Patients with Low Literacy Skills, Second Edition, is available for free online through the Harvard University School of Public Health website. We will have a link to that resource on the Health Literacy Out Loud website, as well as others that you mentioned. Thank you for that.

You have something in there that I often use and refer to as almost the gold standard of materials. That’s your SAM, Suitability of Assessment of Materials. Could you talk about that a little bit, please? Not only do we need to do the right thing, but how do we know we’re doing the right thing?

Len: We always had some kind of strategy, but it wasn’t until we were doing a study for Johns Hopkins University on nutrition materials and their suitability that we created this.

They had a selection of 75 materials, and they wanted to know which ones were really suitable for patients across the board, including patients with limited literacy skills. We re-looked at our research and the practice and came up with a set of criteria that you could measure numerically for each piece of material.

Ceci: The women-infant-children program had a very good checklist for the materials they were using, but it was limited mostly to the reading level.

At that time, visuals were very seldom considered material for examining or analyzing for low literacy. Yet visuals are the first thing that people with low literacy skills look at.

We decided to benefit from the checklists that were already available, but expand them to include the points that we felt for low literacy were critically important. That included culture.

Len: That was one of the first comprehensive, quantitative measures of suitability of materials. Today, it is being used routinely at many medical centers throughout the United States.

Helen: I’m hearing lots of strategies from you about concepts, categories, contexts and value judgments and paying attention to those. What would you see in a perfect world? If this were a health literacy perfect world, what would we all be doing?

Len: One would be for health literacy to be integrated and made a part of the education of doctors, nurses and other healthcare professionals. It would be an ongoing thing, and you wouldn’t have to episodically do training and workshops.

Ceci: In the health literacy field, we need rewards. Institutions need rewards. Healthcare professionals need rewards that their work is producing something.

A number of the big medical care institutions like Kaiser Permanente have included literacy in their criteria for accreditation. I think that is also an important step so people in the institutional field know that by trying to meet literacy standards, they are also helping their own institution achieve accreditation standards.

Helen: I’m hearing from both of you that in this perfect health literacy world it takes the efforts of many. It takes the day-to-day professionals to do what they need to do, using the pictures and simple words and putting information into context in a person’s life, but it also takes the accreditation agencies and literacy specialists we can learn from.

As you two did in your life, it takes a marriage of all of us to make healthcare more understandable.

Len: That’s very well stated.

Helen: Thank you so much for sharing your historic perspective, views and visions. You’re terrific.

Len: Thank you. So are you, Helen.

Ceci: You’re the new pathfinder.

Helen: I’m inspired by the Doaks and hope you are, too, but health literacy isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website, www.HealthLiteracy.com. While you’re there, feel free to sign up for the free What’s New in Health Literacy Consulting enewsletter.

I’m excited about these podcasts as tools for learning and teaching. New episodes come out about every two weeks. You can find more information as well as important links and the references we were talking about today on the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

If you’ve like what you’ve heard on these podcasts, tell your colleagues and friends about Health Literacy Out Loud. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.