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 pretty amazing people. You will hear what health literacy is, why it matters and ways all of us can help improve health understanding.
Today I’m talking with Dr. Barry Weiss who is a tenured professor in the Department of Family and Community Medicine at the University of Arizona College of Medicine.
He also is an affiliate professor of public health in the College of Health Sciences at the University of Alaska Anchorage.
Dr. Weiss has been involved in health literacy and patient-physician communication for much of his professional career.
Among his many accomplishments Barry Weiss has written more than 150 journal articles, authored several books, advised numerous committees and developed the health literacy screening tool the Newest Vital Sign.
Barry is an avid outdoorsman and I had the privilege of hiking with him and his wife in Alaska.
Barry Weiss: Hi. Good morning.
Helen: I’m so glad that you’re on our podcast. I know you in many different ways at this point.
I remember interviewing you for an article years ago about the Newest Vital Sign. I’d love to focus in on that whole role of literacy screening tools, of which the Newest Vital Sign is one of them.
Let’s take this right from the beginning. What are literacy screening tools?
Barry Weiss: There are literacy screening tools, and there are health literacy screening tools.
The public school systems have had literacy assessment instruments for years to detect what grade level the students read at in the elementary school or the high school. That’s general literacy, the ability to read and write and get information.
In the last 10 to 20 years, there has been development of a number of health literacy tools. They look at the ability to read and understand information but in the context of health information. There are several of them out there that have been developed.
Helen: Like what?
Barry Weiss: The first one was called the REALM, the Rapid Estimate of Adult Literacy and Medicine. That is a reading list. It’s basically three lists of medical words, and they go from very easy words that are medical, such as flu, fat or eye. At the end are very complicated medical words.
People are asked to read the list out loud. When people start having trouble pronouncing them, you know they’ve bogged down at that point and you can get a sense for whether their health literacy skills or familiarity with health words are low.
Helen: Thanks for making that distinction between literacy and health literacy. The REALM was developed by Terry Davis, wasn’t it?
Barry Weiss: That’s right. Plus a team that she worked with.
That technique was used in the general literacy world for a long time. Reading lists are used in schools, so it’s an old concept.
The REALM works very well to assess in general terms whether people’s health literacy skills are low, medium or high. It takes two or three minutes to do it. It’s a quick, easy instrument.
Helen: I think that probably many of our listeners might have been hearing about the REALM. I know I get emails a bunch of times asking, “How do I get a copy of the REALM? Is it good? Should I do it?”
Let’s park those questions for a minute and just keep going with what some other health literacy screening tools are in addition to the REALM.
Barry Weiss: There’s one call the Test of Functional Health Literacy in Adults, the TOHFLA. That’s a much more complicated instrument. It can take a half hour or more to administer it.
That involves basically multiple-choice questions and posing scenarios to patients about how they should take their medication or what they should do as preparation for a medical test. It has sentences with words left out and you have to put words in those sentences that make sense.
It’s a much more in depth and, I think, more accurate assessment of health literacy. All of the questions and scenarios are health focused.
That’s been used in research as well and it’s also been used as a gold standard. I’m not completely sure how it became a gold standard because all of those health literacy assessments measure something a little bit different.
There have been a number of studies comparing one to the other and the other to the other and they all measure something a little bit differently. The TOHFLA is a dependable test.
The TOHFLA’s availability is in English and Spanish, whereas nobody has ever been able to come up with a really good version of the REALM in Spanish. There have been some attempts. There is one called the SAHLSA that gets at the same idea but it’s not really the REALM.
Helen: We have the REALM and the TOHFLA. You said the TOHFLA is the gold standard which I assume means if you’re a researcher and you need to do the one test it might be the TOHFLA.
Barry Weiss: Oh, no, I wouldn’t say that. It’s the gold standard I think because it was published in The Journal of the American Medical Association, a very influential journal, and it’s just often used as the gold standard.
I’m not clear that it is the ultimate assessment of health literacy, but it’s used that way with some validity because it’s a more complex instrument.
There is the one that we developed in Arizona, the Newest Vital Sign, which is basically a nutrition label from a make-believe container of ice cream.
Patients are asked six questions about what’s on the nutrition label that range from questions like, “If you ate the whole container of ice cream how many calories would you get?” Another question is, “Make believe you’re allergic to peanuts. Is it okay to eat this ice cream?” Then they’d have to look at the nutritional label to see if there are peanuts in it.
That’s another one that just takes two or three minutes to do. It’s available in English and Spanish, and it’s out there.
Helen: I’ve always liked yours, Barry. Out of all the ones that I have seen, that’s the one that feels pretty good to me. I’ve never used the other in practice.
Barry Weiss: People like it. I got emails multiple times a week for years and years about it with inquiries. I think it’s because the nutritional label has clinical relevance. Dieticians use it when they’re meeting with patients to see if this patient can understand a nutrition label before they get going in trying to work with them. Yes, it’s popular.
Then there’s another one out there that goes under different names but basically they’re single-item literacy screens. They are single questions you can ask people to get a sense for whether they have adequate health literacy skills. I can never remember the exact questions, but I think you probably have them in front of you.
Helen: Actually, I’m ready for you here. There was an article that came out a while ago which talks about the Brief Health Literacy Screen, and that one has three questions on it.
“How confident are you filling out medical forms by yourself?” is the first one. The second one is, “How often do you have someone help you read hospital materials?” The third question is, “How often do you have problems learning about your medical condition because of difficulty understanding written information?”
Barry Weiss: There have been subsequent studies, even that first question, standing alone without the other two.
Helen: “How confident are you filling out forms by yourself?”
Barry Weiss: That performs reasonably well and compares reasonably to the Newest Vital Sign and the REALM.
Again, all of these instruments or approaches are somewhat interchangeable. They measure similar concepts but not identical concepts. Any of these can be used as a screen for whether an individual has adequate or inadequate health literacy.
None of them are perfect enough to do one of these and say, “I now absolutely know for sure that this person has low literacy.”
Helen: Barry, I’m going to ask you to put on two hats. I know you’re a researcher and you also are a practicing physician. For all of these screening tools, they’re out there and they all accomplish something, are they worthy to use?
Barry Weiss: I have never personally used any of these. I’ve used them in research studies. They have a role in research studies if you’re trying to find out if people with low versus adequate literacy have higher rates of this or whatever you’re trying to look at.
To take an individual patient who’s walking in to have their blood pressure checked and check their literacy skills, I’ve never done that, and I don’t really know anybody who recommends doing that
The currently recommended approach by pretty much everybody in the health literacy world is using what we’re calling Universal Precautions. That is assume that the public is not going to understand you if you talk in complicated medical terms and just universally use easy-to-understand words with everybody.
Helen: I’m so glad you’re saying that. I am a strong believer of that myself.
I also remember something from years ago. I know Archie Willard very well. He refers to himself as a new reader, an adult learning to read.
I went to a conference that he had for other adult learners, and they talked about the role of these types of screening tests. Collectively they came up with the statement to the idea that a doctor’s office is no place to ask about literacy. That has resonated with me for years.
I get a lot of questions and I get emails all of the time asking, “Which screen should our hospital be using? We’re developing a policy and we need to respond to some regulatory body.” What would you say to those people?
Barry Weiss: I’m not aware that the Joint Commission is requiring anybody to test the literacy skills of their clientele. I’m certain that’s not true because nobody is recommending doing that.
If I have a patient in front of me and I have their literacy skills assessed either by me or by somebody else and I know that this person has adequate versus low literacy, there’s no evidence that knowing that information about them changes their health outcome.
There is some evidence that it makes the doctors nervous when the doctors know the person has low literacy skills. They think, “I hope I can communicate with them effectively.”
I think we’d be much better off putting our efforts into working with clinicians that are not always very good at it and working with them to teach them to communicate in normal words.
It’s really difficult after you go through medical education over a period of months, even. You lose track of what the medical vocabulary is of the general population.
I still remember that I had a grandmother who had diabetes and had her foot amputated. I went to medical school and in the first month I learned what diabetes is. I thought, “Oh, I didn’t understand that.” I had dealt with it in my family and I had no clue.
I think we lose track. I think we’d be much better putting our efforts into teaching clinicians to communicate in terms that everybody understands rather than assessing people’s literacy skills.
Helen: I’m so glad you’re saying that and you’re saying it so clearly. I hope that listeners everywhere will take your message to heart.
The other side of it is you’ve spent time developing a tool. Other very brilliant health literacy researchers have developed these tools. What place do they have?
Barry Weiss: I think they have two roles. One is for use in research.
I think the whole topic of health literacy has gained attention because of the health literacy research that has been done with these tools, like identifying the populations of low literacy, they get less preventive care or any number of different topics that have been identified. These tools are useful in research.
They occasionally are useful at convincing nonbelievers.
I get to speak at two kinds of meetings. I get to speak at health literacy meetings where the people who are attending are into health literacy and they know about the topic.
I sometimes get to speak at general medical meetings. I always say they put me in between heart attack and kidney stones to talk about health literacy.
In that setting, people raise their hand and say, “What are you talking about? All my patients are smart. They’re educated and they know all of this stuff.”
What I’ll usually recommend is for them to take one of these tools, one of the quick ones like the REALM, the Newest Vital Sign or even the Single Item Screens, and just go test the next 100 patients who walk in the door and see what they find out.
I’ve gotten emails back from people saying, “I didn’t realize that was the situation in my practice.”
Helen: It makes it very real to the practitioner.
Barry Weiss: That is useful. There is no point in just doing it routinely because it’s not going to change anything.
Again, you’d be better putting your efforts into learning how to talk normal English or whatever the language is. That’s a whole other issue.
I get emails constantly, once a week almost, from people around the world who want to translate The Newest Vital Sign to other languages. You can’t just translate.
I did a project with a group in the United Kingdom where people speak English but the English is a little different. It took us almost two years to develop a UK version of the Newest Vital Sign that really worked well and everybody understood what was in there and understood the questions just by changing words here and there.
Helen: It’s interesting, Barry, somebody sent me an email. They were very proud of what they had done. They had taken the REALM, I think, and adapted it. They came up with words they thought went from simple to difficult related to their very specific body of clinical practice. They were so proud and they were doing this for everybody. I cringed seeing that.
Barry Weiss: Why were they doing that?
Helen: Somebody just made up that whole thing. My guess is that they now have some form and they’re checking off a form saying, “I did this. I considered health literacy. I considered good communication,” and they think their job is done.
To me, Barry, you’re validating my perspective that, one, the tool isn’t accurate and, two, why are they even doing that?
Barry Weiss: If you go back and look at the research that Terry Davis did when she developed the REALM and all the other standard literacy instruments she compared this performance to. It was a big project.
You can’t just make up a new list and say, “We’re ready to go.” The concept is right, but who knows if the instrument that you’ve developed is valid. Again, why are you using it?
Every week I get a report from the National Library of Medicine on what’s been published in health literacy in the past week, and there are endless studies now of people testing the health literacy skills of people in their specialty.
What are the health literacy skills of people in a rheumatology clinic, a kidney clinic, an orthopedic clinic and a dental clinic?
Helen: I see those too.
Barry Weiss: Stop it. We know on a national level what the health literacy skills of the public are. Why do we need to know in your clinic?
Helen: That’s great. I love it. I love your advice. Just stop it.
Can we reframe this a little bit differently? I think you and I are very likeminded, and I hope that our listeners are too.
Our listeners care about health literacy. They could be practitioners, public health, clinicians, librarians or teachers. We all somehow care about communicating health information more clearly.
What recommendations would you have for them about the role of screening tools?
Barry Weiss: I think it’s the same thing. If you’re going to use it for research or if you need convincing that health literacy is an issue in your practice, but I don’t think there’s really any other role.
Helen: That’s it. Use it either for research or convincing others. Know the very limited role that they have.
Barry Weiss: Here’s another one on the side. In one project I did with one of these instruments, I think we were using the REALM, the practice in which we were conducting the study decided to do a REALM assessment of the staff in the clinic.
They were really spooked to find out that the health literacy skills of their nursing assistant, some of the nurses and some of the other people working in the clinic were not at the level they thought they were, which was very interesting.
I’ve heard that comment from other people too. They say, “We assume that everybody working around us has the same health literacy facility that we do, but maybe not.”
Helen: What that can be doing, and again I can relate it to my hospital days, is that it can be that aha moment so that you can get funding, time or somehow get that buy-in from your higher ups to continue going forth.
Our employees may not understand. Our patients may not understand. This is worthy and credible for us to make sure we communicate clearly with everybody.
Barry Weiss: Higher ups are the big issue actually.
This afternoon I’m doing grand rounds at the big Alaska Native Medical Center. They sent me some of the forms they use there that they are required to use by the healthcare system, and they’re unintelligible.
One of the problems I see a lot of times is people complaining about forms they have to use and things they have to use to qualify for meaningful use.
The consent forms required by their health systems that are not intelligible but the people in the audience are not the readership of the health systems or the insurance companies that are requiring the forms.
Sometimes I think if we’re going to do anything to address health literacy it would be getting the people who are making the rules to come to some of the health literacy meetings.
Helen: I agree with you. I am much more concerned about those who don’t attend the sessions than those who do.
Barry, this was great. What I want to do is to have a few of these references and links that we talked about on the Health Literacy Out Loud website, including the article on The Newest Vital Sign from when I interviewed you several years ago.
You’ve done so much to help our field move forward. I know you’re a very long-time health literacy champion personally and professionally. I just want to thank you for all you’re doing, Barry, to help move this forward and to help us make sense about this in our practice and in our research. Thanks for being a guest on Health Literacy Out Loud.
Barry Weiss: It was my pleasure.
Helen: Wow. As we just heard from Dr. Barry Weiss, health literacy is really complex and has many layers and nuances, but we all care about communicating our health messages clearly.
For help communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you’re there, sign up for the free monthly e-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 learn more at the Health Literacy Out Loud website at www.HealthLiteracyOutLoud.org.
Did you like this podcast? Even more, did you learn something new? 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.