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Assuring Quality Care for People With Limited Health Literacy (Slides with Transcript)

Authors: Carol Easley Allen, PhD, RN   David A Kindig, MD, PhD   Ruth M Parker, MD   Debra L Roter, DrPHFaculty and Disclosures


  • Carol Easley Allen, RN, PhD: Hello. I am Dr. Carol Easley Allen, Professor and Chair of the Department of Nursing at Oakwood College in Huntsville, Alabama, and past President of the American Public Health Association. I'd like to welcome you to this Medscape Spotlight panel discussion on "Assuring Quality Care for People With Limited Health Literacy." This activity will offer both CME and CE credits.

    I'm joined today by my colleagues, Dr. David A. Kindig, Emeritus Professor of Population Health Sciences at the University of Wisconsin School of Medicine and Public Health in Madison, Wisconsin; Dr. Ruth M. Parker, Professor of Medicine, Emory University School of Medicine, Atlanta, Georgia and General Internist, Grady Memorial Hospital in Atlanta, Georgia; and Dr. Debra L. Roter, Professor at Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland.

  • Slide 1. Title

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  • The learning objectives of today's program are to: define health literacy and review how limited health literacy may affect the quality of healthcare, examine the relationship between health literacy and patient safety, identify those communication skills and clinical interventions that may improve health communication for all patients, and, finally, review clinical care strategies that may improve care for those populations most vulnerable to the effects of limited health literacy.

    Our purpose today is to provide some practical strategies for clinicians to use with all patients to ensure that clear health communication takes place. I would like to turn to Dr. David Kindig to talk about the Institute of Medicine study "Health Literacy: A Prescription to End Confusion" and to give us some other information that will help us provide a context for our discussion.

  • Slide 2. Learning Objectives

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    Learning Objectives

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  • David A. Kindig, MD, PhD: Well, thank you. I am really happy to be here with you discussing this issue. I know we are going to focus primarily on practical strategies that we can use in healthcare and public health settings for communication; but, before we get to that, it is probably useful just to give a little bit of background about the subject of health literacy.

    I was fortunate to be able to Chair the Institute of Medicine's committee on health literacy, and we produced this report that you mentioned. Before we get into the subject itself, it's probably important to talk about what we really mean by health literacy. Actually, the definition that we used in our committee and is being used more widely is the following:

  • Slide 3. Health Literacy Background and Context

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    Health Literacy Background and Context

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  • It is the degree to which individuals have the capacity to obtain, process, and understand health information to make appropriate health decisions. So, it is a pretty broad kind of a definition, and it has some implications.

    Often when we talk about health literacy, we think about reading and writing and that sort of common parlance about literacy, but it is actually more than that. It is numeracy, understanding numbers. It's listening, speaking, conceptual knowledge about biology, about health, and about healthcare.

  • Slide 4. IOM Committee Definition of Health Literacy

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    IOM Committee Definition of Health Literacy

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  • The main finding of the study -- and this surprised me -- when I took over chairing this committee, I would never have guessed that our main finding would be that 90 million US adults lack the literacy skills to effectively use the US healthcare system. I mean, that is really saying something. People originally had trouble understanding that I talked to lots of reporters when this study came out, and they said, "How can it be almost half of US adults?" We understand, of course, people that really are at the limits of literacy issue and really have trouble reading at all. We understand that. But I would always say to these reporters, "Could you understand your last hospital bill?" or "Have you tried to help your mother with Medicare policy or with advance directives?" When you say that, it means that this issue is for lots of us. That is why the 90-million figure is not so large.

  • Slide 5. IOM Committee Primary Finding

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    IOM Committee Primary Finding

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  • Our study went into all of the research that's been done on this and, just to be brief about it here for this conversation, we know that limited literacy people have poorer outcomes. They use mortality, morbidity, unhealthy days. They use preventive services less. They overutilize our hospitals and emergency rooms. Because of that, costs are a lot higher. Our research isn't good enough yet to say exactly what those costs are, but it is in the neighborhood of probably 75 to 100 billion dollars of excess cost that are attributed to that.

  • Slide 6. People With Limited Health Literacy...

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    People With Limited Health Literacy...

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  • The last thing I would like to say to set the context is that we spend a lot of time on understanding this as a systemic problem. Lots of people think, "Well, this is just in a doctor's office between a doctor or a nurse and a patient." And, of course, there are important things there that we are going to hear about. But, unfortunately, it's more complicated than that. We had a great diagram that we worked out on this model, and it's really the intersection of the healthcare system -- not just the doctor-patient interaction, but the system itself -- our policies, our institutions, the education system, and what that means for limited literacy in lots of different ways -- and our whole culture and society as a whole (mass communication, issues of different cultures). So all of those things together means that it's a more complicated problem. We are going to have to work on all of those fronts. I think that is the general background for thinking about what we can do about this.

    Dr. Allen: Right now, issues of patient safety are at the forefront of many of the controversies and discussions of issues that we have around healthcare in the United States. We do know that there is a critical intersection between health literacy and patient safety. I would like to turn to Dr. Ruth Parker at this point to talk to us about that critical intersection.

    Ruth M. Parker, MD: I think a critical point is really to step back and think of what it takes in our country to be a patient right now. You can't really examine that question without putting yourself into the place of a patient who says, "Gosh, what have I got to do to get through the day?" "What do I have to do if I really want to take care of my health? Or if I want to take care of a chronic illness, if I happen to be one of the millions of people who have a chronic illness?"

    The real focus comes down to looking at the complexity on one side of what you have to navigate and do -- and then what you understand about that and what's being set forth for you to help you get through the day, to do what you need to do.

  • Slide 7. Health Literacy Framework

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    Health Literacy Framework

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  • A great example, for a clear focus on this from a safety angle, is to think, "What does it take to take a pill?" "What does it take to pick up your medicine bottle?" Walk to your cabinet, open your cabinet. Maybe you are one of the average Americans who's over 65 and you are on at least 6 different prescription medicines in a given day. You fill 27 or more prescriptions a year. They come from 8 different providers. You pick up your bottle and you look at the label. The label has some instructions, but there are all kinds of stuff on a label. There are warning labels -- what do they mean? What do they say? There are different colors. There are different shapes. They have different icons on them. Then you drill all the way down to, maybe, take 1 pill 2 times a day. Or maybe it says take 1 pill twice a day. Or maybe it says take 1 in the morning or 1 at night. Or maybe it says take one at 8:00 a.m. and one at 8:00 p.m. That is just one of 6 that you have. So, you start looking atthese labels and these instructions and these warnings, and you try to put all of that together, and you say, "What am I really supposed to do?"

    Some of that may seem very simple. And, I think, one of the important things is that complete illiteracy and not being able to decode or read any of those words -- that happens some, but that is not the real problem. The real essence of this is the meaning of words that are out there. We say a lot of things in a lot of different ways. The essence of this is coming to the real meaning. Those of us who are providing all of this, be we an individual provider or a system, need to make sure that the people on the other side really understand it.

    So let's go back to that pill bottle. I am a prescriber, and I write this: "Take 1 pill." "Take 1 pill 2 times a day." The patient gets that on the other side, picks up their bottle, and says, "All right. I am going to take it at 8 in the morning and at noon." Well, that isn't what I meant -- but that isn't what I said. What are we doing as a system to make that clear so that patients can do what they need to do to get through the day?

  • What Does it Take to Take a Pill?

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    What Does it Take to Take a Pill?

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  • Then you can even push it a little further. What's the evidence? Does it matter if I take it at 8 in the morning and at noon? Do I really need to take it at 8 and 8? Why do we as providers write it so many different ways? Why do the prescribers transcribe it so differently? Why do some pharmacies do it one way, some another? What are we, as a larger system that is providing something that patients may need to get through the day -- what are we doing to make it navigable? To make it useful, something they can act on?

    With medications, it's about safe and effective use. You have to be able to understand. You have to be able to safely take it in order to get the efficacy on the other side. But when we think of health literacy and the intersection of health literacy and patient safety, just think about taking a pill. That is a wonderful way to say: are we as a system or are we as individuals doing all we need to do to provide information that is as navigable as possible?

    In America, I think if we had 20 stoplights that all looked different, we would probably have a lot more traffic accidents. And there is nothing, really, that intuitively obvious about a stoplight. It is red, green, and yellow. You are supposed to stop, to slow down, or speed up. Most people do, and it controls the flow, even though on the surface that may not have seemed that obvious.

    We don't do the same thing with the kind of information that we are giving out. So, one path for this sort of intersection that we're seeing is to really become clearer in how we communicate the essential information that is presented in a way that actually does become more useful to patients; something that they can really act on.

    One of the things I've really learned from patients listening to them over the years is, I think those of us who are doctors -- and I'm sure I'm one who is guilty of this -- we are really masters at revelation, and we can reveal paragraphs and paragraphs of information, but it's not all useful. What patients really want to know is, "How do I get through the day?" I think that one of the key things on the other side of this is making sure that we as providers give useful information and the kind of information that people really need to get through the day rather than quite so much emphasis on all of the background.

    You are a real expert on that, Debra, so I know you can expand on that.

  • Slide 9. Questions for Healthcare Providers

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    Questions for Healthcare Providers


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  • Debra L. Roter, DrPH: In regard to patient safety, the ability of patients to truly partner with their doctor depends on their mastery of some very basic comfort and facts with their medication.

    So if, as a patient, I am comfortable and clear on the way in which I need to take my medicine -- the dosage and the scheduling and potential side effects -- then I could come back to you and talk about an issue or a problem that I may be having. And it's, of course, possible that a physician makes a mistake when they renew a prescription. If I am familiar enough with my medications, then I'd be able to say that "this is not what I had been doing in the past." "This medication doesn't look like the one that I had in the past."

    So, I think that when we generally consider patient literacy and safety being able to read a label and do as you are told, we think of the direction of the information going in one way -- that is, the patient understanding and doing as instructed.

    But a really critical element of patient safety is the patient being able to join together with the doctor and say, "Well, let's talk about this." Having confidence in being able to engage and check that, in fact, the prescription is the appropriate prescription, that the dosage is as intended. I think that aspect of safety is an important one that we gain when we make things simple enough so that our patients feel confident in joining together as a partner.

    Dr. Kindig: In this conversation so far, we've talked about prescriptions and pill bottles, and what happens at that level, and that is really important. But there are other issues, particularly these days. There is a lot of movement towards consumer-oriented healthcare and health plans. We are also beginning to expect consumers to go through a book and make judgments about the cost of a plan or understanding these overall quality indicators that come along with the HMOs. That is a level of understanding and literacy that is equally complicated, if not more, than understanding the pill bottle. This healthcare system is getting more and more complicated, and people are not getting more and more literate. So the problem is probably going to get worse before it gets better. We have a lot of work to do, don't you think?

  • Slide 10. Health Literacy and Patient Safety

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    Health Literacy and Patient Safety

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  • Dr. Parker: We do, yes. I think the National Adult Assessment of Literacy, the results that came out of that that had the first national assessment of health literacy... I think the headline there is really that there are only 12% of people who were proficient.

    Literacy is very skill-based is the way to frame it. Be it oral, be it written, be it whatever form of communication, it is a skill base. It has to do with looking at a chart for a health plan. If you have only 12% of the population in a population-based sample that is able to look at a chart and understand a health plan, that tells you a whole lot, particularly as we move more and more toward the role of consumers in it. Also, look at the impact this has on the choices that people make and whether or not they actually are informed choices.

    Dr. Allen: What do you all think about the responsibility of the system, then? Because, many times, we tend to frame the discussion in terms of the patient's responsibility, almost as if we were blaming the victim. What is the responsibility of the system in terms of making those kinds of connections between safety and literacy most apparent?

    Dr. Roter: I absolutely think that's fundamental. I think it's a travesty that the charts that you have to navigate to figure out which health plan is the most appropriate for you are written in so complex a language. I think it is a travesty that Part-D in Medicare for the prescription drug coverage is so complicated.

  • Slide 11. 2003 National Adult Assessment of Literacy

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    2003 National Adult Assessment of Literacy

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  • So if we think about responsibilities for "plain speak," -- that is, the conveyance of information, the conveyance of care, in terms that anybody can understand -- that is a system responsibility and a provider responsibility. The fact that people don't know what is being conveyed should not be their fault. It should not be their responsibility.

    I think that, as we go forward, we have to acknowledge limitations and deficits that patients may have in terms of literacy. But I think an overwhelming responsibility is a system responsibility and a provider responsibility, so that this notion of simplification and plain speak is incredibly important. If you can't convey information in a conversational manner so that anybody can understand it, then you're not doing a good job.

    And I think it is ironic that health providers of all kinds, and health educators -- I'm afraid to say -- as well, have used the complexity of their language as a marker of their own sophistication and education. In fact, it is the exact opposite. It is far harder to explain something in simple terms than it is to use textbook phrases, and I think that's the objective that we have to move toward, to turn back the responsibility and the definition of doing a good job to one that includes plain speak and ordinary conversations in the delivery of medical care.

    Dr. Kindig: Yes. Our report was quite clear on that. There are responsibilities that patients have. There are responsibilities that individual providers have in clearer speaking. But there are responsibilities for the health organizations themselves. We actually recommended that accreditation standards be about health literacy -- that JCAHO or the National Committee for Quality Assurance or whoever accreditates, they should build that in just like whether the floors are clean -- but it goes beyond the healthcare system.

    I was amazed to learn that we have really good K-12 health education standards in our schools. But in almost no state are those adequately implemented. And [we have] the opportunity to teach in the health context -- math, reading, writing, and biology -- as well as issues throughout the whole society. How do we use our entertainment programming in mass communication to get over some of these barriers? It is across both of those, and that is an important thing to keep in mind.

  • Slide 12. Plain Speak

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    Plain Speak

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  • Dr. Allen: I know our time is limited. I want us to talk a little bit before we close about vulnerable populations. I realize that all populations are vulnerable in a sense, but some are more vulnerable than others, and I want Dr. Roter to talk to us a little bit about some of the vulnerabilities that you see. Then we can turn it over to all of you to comment.

    Dr. Roter: I have been fortunate to have a study recently of elderly populations and interaction with their providers, and the elderly defined at least generally and in our study as those patients over the age of 65. So we know that there are particular challenges that those patients have, both cognitively and in terms of literacy. So many of those patients have not been exposed to educational instruction in the way that younger generations have, but they also have suffered cognitive deficits as they suffer from chronic diseases. So the elderly are particularly vulnerable when we think of the kinds of information that they need to carry forward from their medical encounter and treat their conditions.

    There are 2 or 3 things that I think are particularly relevant about the elderly that we can pay attention to within the context of care delivery, and that is about 40% of patients over the age of 65 bring somebody with them when they go to see a doctor. Generally, it is a family member -- either a spouse or an adult child, usually a daughter -- that will accompany a parent to the medical visit. They do very important things that help an elderly patient take care of themselves. They will take notes. They will remind the patient of issues that they meant to bring to the encounter. They will encourage them to be more active.

    Ruth, I know you work with children. Similarly, there is someone else there to help. Tell us a little bit about that.

    Dr. Parker: I think the other thing is that many of us as practitioners don't even think about the fact that this person who is the assistant, they may be a surrogate reader and they may be the person who takes it in, remembers it, helps recall, whatever -- they are out in the waiting room. They are out in the waiting room when important information is being given.

    In pediatrics, you wouldn't see that being so much the case because many times they are the primary caretaker and they are there with their child. That is incredibly important. But then there is sort of the whole life-cycle thing. It may be one thing when it is a neonate, another thing when it's a young child, and then you get into the autonomy issues that are arising in adolescents where you are trying to encourage them to begin to take responsibility, particularly with a chronic illness, to see themselves as the person responsible for their health.

    There are big challenges here for those of us on the delivery side to think about -- what messages are we actually giving our patients, and are we giving them the messages that help them get the information they need to get through the day? Are we being clear, and are we being concise in the delivery of the concrete information that they really want and need? Rather than just putting out lots and lots of information, which we seem to be pretty good at doing.


  • Slide 13. Vulnerable Populations and Health Literacy

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    Vulnerable Populations and Health Literacy

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  • Dr. Kindig: Just quickly, the minority populations are particularly challenged, and, of course, many of our immigrant populations and people without English as a language, it's not primarily non-English speakers that we are dealing with here, but they also are a vulnerable population we have to pay particular attention to.

    Dr. Roter: High school dropouts, another incredibly important population to keep in mind, particularly with the epidemic proportion of high school dropouts that we have in our country.

    Dr. Parker: And we can also think of prisoners and others at particular risk.

    Dr. Allen: This has been a fascinating discussion. I would encourage all of us to take a look at health literacy and the IOM Study, to get more information about some of the things we have raised this afternoon. Let me just conclude with a few take-home messages.


  • Slide 14. Vulnerable Populations

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    Vulnerable Populations

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  • First of all, good communication is important for all clients and patients, not just those who we might suspect of being low health-literate.

    It's important for us to pay good attention to vulnerable populations and make sure that they, especially, are given the kind of good communication that we hope is given to all.

    We need to be conscious of best practices as we encounter them and consciously repeat them and encourage our colleagues to use them as they communicate with patients.

    Finally, remember that health literacy is a patient safety issue.

    I want to thank our distinguished panel: Dr. Kindig, Dr. Parker, and Dr. Roter for their insight and wisdom and for making this a very, very enlightening discussion that has been very interesting to me today. And thank you all for tuning in to this Medscape program.

  • Slide 15. Take Home Messages

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    Take Home Messages

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