Prescription for confusion: The cost of limited health literacy

Have you ever listened intently at a medical appointment just to leave with only a vague idea of what is going on with your health, let alone what you should do about it? In fact, studies suggest that as many as 9 out of 10 patients have trouble understanding medical information at some point in their lives. On this episode of MedBoard Matters we are discussing health literacy and how a lack of it adversely affects virtually all patients. 

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Host: Jean Fisher Brinkley, Communications Director, North Carolina Medical Board
Guest: Sharona Y. Johnson, PhD, FNP-BC, North Carolina Medical Board Member
Producer: Sylvia French-Hodges, Communications Specialist, North Carolina Medical Board

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Email your questions to: podcast@ncmedboard.org.

Transcript

Episode 51 – Prescription for confusion: the cost of limited health literacy

Intro music: 0:00 

Podcast introduction: 0:10

Have you ever listened intently at a medical appointment just to leave with only a vague idea of what’s going on with your health, let alone what you should do about it? Maybe your clinician recommends that you stop using a medication you’ve been on for years but you don’t quite understand why. Or you quiz a loved one on the treatment options for their cancer after an oncology appointment and they can’t tell you a single thing. This is Jean Fisher Brinkley, Communications Director for the North Carolina Medical Board, and I know I’ve been there. Most of us have. In fact, studies suggest that as many as 9 out of 10 patients have trouble understanding medical information at some point in their lives. On this episode of MedBoard Matters we are discussing health literacy and how a lack of it adversely affects virtually all patients. A health literate patient is one who can find, understand and use information to inform their health decisions. My guest today is Sharona Johnson, a current member of the North Carolina Medical Board who is very passionate about helping patients and organizations improve health literacy.

Interview with Dr. Sharona Johnson: 1:24

JFB: Doctor Johnson, thank you so much for joining me. Can I ask you to introduce yourself to our listeners, perhaps a little bit about your background, your training and your current clinical role? 

SJ: Sure. First, I just want to take this opportunity to say thank you for allowing me to speak on a subject that is near and dear to my heart that I'm very passionate about. I am Doctor Sharona Johnson. I have my PhD in nursing from East Carolina University and I'm also faculty there. My main job, though, is with ECU Health, where I am an Executive Director over at Vance Clinical Practice, and I practice with ECU Nephrology and Hypertension as a family Nurse Practitioner. I would mention on the side, I have my own business where I focus a lot on increasing health literacy within communities.

JFB: That's fantastic. Thank you for that. And in fact, I knew already that you were passionate about health literacy, which is why I asked you to be my guest for today's episode. I wonder if you could tell me how did health literacy become such a strong interest for you? 

SJ: Well, it really started early in my career when I noticed that many of my patients were leaving appointments confused and their family members would call back and want to know what we discussed and wanted more information about medicines for their parents and their relatives. But, you know, on a personal note, it also began when my parents began to have chronic diseases and my friends and other people would call me and want to understand more about just navigating our health system. I realized that this is definitely a problem that we need to focus more on as an organization, as well as personally as providers.

JFB: Yeah, gosh, I think everybody, including myself, has an example or two or three of family members or friends who have been through that, just coming home from the doctor and feeling confused. Like, I can tell you what the doctor said, I'm not sure why, you know, we're doing what he or she suggested. As you know, NCMB recently created a new resource for patients, and its purpose is actually to help them develop their health literacy skills. And I'm really hoping that our conversation today will help us promote that by helping our listeners understand why health literacy is so important. So if we could start just by defining the term, what does it mean to be health literate? 

SJ: Absolutely. Health literacy is foundational to good health. And it's interesting when you look at the terminology, Healthy People 2030 updated the terminology recently that there is actually two aspects to health literacy. One is personal and one is organizational. And so personal is the degree to which individuals have the ability to find, understand, and use information and services to inform health related decisions and actions for themselves. And then from an organizational level, it is actually the degree to which organizations enable individuals to find, understand and use information and services to inform health related decisions.

JFB: So ideally, both of those are sort of working in harmony. You know, you get patients up to the point where they sort of know how to gather that information, how to use that information. And on the organizational side, they're learning how to provide it.

SJ: Totally. And, you know, it's not just about reading a pamphlet. It's about navigating a health care system with confidence. And the North Carolina medical Board's new resource is a fantastic step towards giving patients the tools they need to just do that. 

JFB: Okay, good. I'm glad you feel that way. Although, honestly, I feel like I could use a lesson on navigating the health care system. It's that's an advanced topic for sure. But you know, seriously, I, to follow up to the initial question about what does it mean to be health literate, I think the next logical question for me is, why is this a problem? What happens when patients are not health literate? 

SJ: Well, you know, economically it's a huge problem. And I know that if you just look at some of the literature surrounding it and stats that surround health literacy, nine out of ten adults are not able to navigate our system. They do not have proficient health literacy. And this leads to non-adherence to medical advice, not taking prescription medicines as they should be, inappropriate use of health facilities. You know, instead of going to your primary care, you may end up in the emergency department. Avoidable hospitalizations. I mean, I can go on and on with all the different things that impact our health care system in our patients on a personal level. 

JFB: So you started out by saying it's a financial or a cost.

SJ: Yeah, it's an economic burden. 

JFB: It's an economic burden. Right. Because instead of people understanding what they need to do to get better, to be healthier, they're not following their provider's advice. They're not getting better. And then, you know, they go on and get sicker or have to be hospitalized, etc.. So.

SJ: Yeah, you know, one of the sources I read and basically said that limited health literacy accounts for 7% to 17% of total health care expenditure each year.

JFB: Wow. And I don't know what that is on a statewide basis, but it is hundreds of millions of dollars. 

SJ: Yes. 

JFB: Yes, I can say that you know and know that it's right without knowing the specific numbers. Wow, that's a lot. So I feel like you've kind of just answered the question, but I was going to ask you how big of a problem is low health literacy? From what you've just said, it sounds like it's a pretty big issue, 

SJ: Yeah, it’s a-

JFB: But what are your thoughts on that? 

SJ: It's a staggering number. Like I said, when you have nine out of ten adults in the United States who have difficulty every day with health information and, you know, it's it gets worse with older adults as well as people with limited education and people whose second language is English. So it's definitely something that we need to pay attention to as health care providers, as organizations. And, you know, I think it's important that even family members get involved when they're concerned about their relatives or friends and families navigating through this health system. 

JFB: I've just been sitting here chewing on that number nine out of ten. That's huge. 90% of patients have difficulty assimilating health information. Could you give some examples of what that looks like? What are the kinds of things that people are not getting or that they're struggling with? 

SJ: The struggle is, I thought about this. The struggle is just the terminology. Just to begin with, the basics. You know, health care professionals take a medical terminology class. I mean, this is something that we learn to communicate with each other. And even in our presentations in the words we use, you know, if I say to you a presentation that I would give to an attending physician or somebody regarding a 57-year-old with hypertension, diabetes, CKD, CAD that presented to the emergency department with an AVM. I mean, do you understand any of what I just said? 

JFB: You know, like 50%, you know, I mean, and probably a little more than that. But really only because I have worked adjacent to health care for most of my professional career. And so you do accumulate some of the language, but absolutely. I have a personal anecdote that I can share that, you know, it's a little embarrassing, but, you know, I'm human. And this was while I was working at the Medical Board, but we had a former Board member who had a family member who was experiencing some health issues, and she said, yes, they were experiencing, I'm probably gonna even mispronounce it, but since syncope?

SJ: Syncope. 

JFB: Syncope. Okay. And so and I was like, what's that? And she's like, oh, fainting, you know, and and that as a former journalist and still as a communicator, one of the roles that we play is frankly, translating. So one of the things that we really work hard to do in the communications department at NCMB is take health care, language, jargon, technical terms, and translate it. So we go from syncope to fainting so that the average person, non-medically trained person understands the language that we're using. But that is a fantastic example because you're right. Because trained medical professionals, this is your language. I think that you just have to pause and remember that your patients, it's not their language. So you have to sort of pause and think and put it in words that your patient's going to understand. 

SJ: I think, Jean, that is number one. Using plain language, you know, the example you gave was just an ideal way of thinking about it. You know, we say myocardial infarction which means heart attack, right. And then we even changed our language for people with kidney disease to, it was renal disease, and people didn't know what that was, and now we say kidneys just to make it plain. And I can tell you throughout a lot of organizations, they're starting to use plain language. And even in the patient portals, we are asked to write it so that when the patient goes in to look at their charts, they can understand what you're writing about. So I think it really begins with having the conversation in using plain language and, you know, really taking the time, which many of us don't think we have a lot of. But I think on the end, the outcomes reflect what we put our time into. 

JFB: Yeah. You know, that's a really important point because there is a time limit. You don't have unlimited time when you're seeing a patient. At the same time, ne thing that I think is really important for patients to know is your medical provider wants you to understand the treatment plan. They want you to know what you need to do so that you can get better. Because otherwise, you know, I would imagine it would get quite frustrating as a medical professional to be working with patients, coming up with a treatment plan that you think is going to help them, and then not seeing the progress or seeing the results that you know are possible because the patient is just simply not understanding what it is that they need to do.

SJ: But I think there's a lot of fear, too, with asking or saying, “I don't understand,” or a lot of stigma surrounding that. And I've seen that many generations, depending on the generation, may feel differently. You know, some of the baby boomers or silent generations are like, well, that's the doctor. I can't really ask them that. And but you can because you're right. You're a physician and your health care provider wants you to be successful with your treatment plan. And it's important for us to ask them to tell us, what did I say? Can you tell me if you were telling your family members, you know how I asked you to take your medication? So it's very important to have teach-back where they can tell us. What did you hear me say to you? And that's not making it small. That's making sure that I'm invested in your health as well as you are. 

JFB: Yeah. Yeah. Now, before we go too far down that path, I want to go back to that original request, for example. So you talked about language, jargon, you know, being a barrier. And I think that's a great one to start with. What are some other barriers to health literacy. 

SJ: Well, I mentioned, you know, age is a barrier. People who have trouble reading or, you know, it's not all about literacy, because even people who can read very well can read the information. For example, take consistent forms. If you've ever had to sign a consent form, there's a lot of information on there. So you can read it. That doesn't mean you comprehend everything that you're reading. And so I've had people going into surgery and we have to say, do you know what your surgery will consist of or what to expect? And sometimes right before they're going in the O.R., you have to have that conversation with them again. And they've already signed the consent.

JFB: Yeah. I should mention there are two new resources that we have. The first one, the one that we're talking about today, is the brochure we've developed on health literacy. The other one that we did is actually on informed consent, because I think we recognized when we started this project that that was a huge area where I think pretty much everybody has been to a doctor or, you know, another medical provider and had to sign informed consent papers. And we all know, like, maybe you skim through, you don't read every word and, you know, that is maybe fine in, you know, sort of low stakes situations. But if it is, you know, a major surgery or there are some significant risks that you need to know about, that's not okay. You really do need to understand what it is that you're agreeing to. So okay, so you said age. I think the generational one is really important. I've experienced that in my own family with, with my dad, with my mom. They don't ask questions. And then when they would get home from a medical appointment, I would give them the third degree. And they're just sort of throw their hands up and say, honey, I really don't know, here's the literature they gave me. So there's that. And then just the actual literacy skills, if you can't read well, that literature is not going to do you any good. 

SJ: And I think that's a whole subject in itself, because people are intimidated or embarrassed when they can't read well. And I can speak from my example. My father had a sixth-grade education, and most health care literature is written in eighth grade or sometimes a little higher. And so, you know, it's embarrassing for a grown adult to walk into a place and say, well, I can't read, or can you help me understand how to take my medicine because I can't read this form? So, some things we need to think about is how are we presenting our information to our patients? And, you know, on the bottles that when they go pick it up from the pharmacy, it may say BID or TID. And I was just saying earlier to a friend of mine that my daughter works in clinical trials, research and BID, she had a medication and she was like, well, I'm going to take it twice a day. But, you know, that's 12 hours apart, you know? And so we had a conversation about, well, mom, how would I know that if they didn't tell me? They just said, take it twice a day. So these are examples of things that we take for granted as health care providers. But our patients need to understand exactly what we mean when we're telling them how to take their medications. So it's not non-adherence or noncompliance. It's that I don't understand. 

JFB: Yeah, that's a great example. I know I've personally seen some of those abbreviations on prescription bottles, and it's not real helpful, you know, to a layperson because we don't use those terms. Let's talk in a little bit more focused way. I mean you've mentioned some things that people can do to improve their health literacy skills, but let's really dig into that a little bit more and just talk about somebody who wants to understand more and feel more confident in their interactions with medical professionals. Where do you start? 

SJ: You start by asking questions. Never be afraid to say, “I don't understand.” We can recommend to our patients and families to use trusted resources. An example is in North Carolina Medical Board’s new guide that you mentioned, the CDC is a good website. There are reputable resources that we can refer patients to, but taking the time to bring a friend or family member to your appointments with you, take notes, write it down, have your health care provider write it down for you, and make sure before you leave the office that you understand. And pharmacists are a good resource as well. If you leave there and you feel like your questions aren't answered, you know the pharmacists ask you before you leave, “Do you have any questions?” Many people will say no, but take advantage of that. They're educated and they can help you understand what your medicine’s for, how to take it, and the side effects that you may encounter from it.

JFB: Yeah, okay. Just want to pause there on the suggestion to take a friend or a family member. Is that something that most medical professionals will allow? 

SJ: Most will. I mean, there are some places that you go and maybe you're having a sensitive exam or, you know, there's some concerns about safety, but the majority, if you have a family member that is healthcare power of attorney or somebody that you have already informed the medical practice that you were going to bring somebody along just to help understand what's going on with your health care, there are very few that will not embrace that and help you because, again, it's all about the outcomes and we want our patients to be successful. 

JFB: Okay. And I guess is that something like if that's something you would like to do, you're like, hey, I want to bring my spouse or I want to bring my sister or my friend along with me to this visit. Should you tell, like you call the doctor, you schedule your appointment. Should you mention that? Or should you just show up with your guest? 

SJ: Well, you know, you can just it's okay, okay to show up, but it's really probably helpful to say, I know my appointment is at 11 a.m. and I intend to bring my mom with me, or my daughter wants to come in for this visit. And I think that helps too, because then your health care provider is aware and can tailor the situation to be able to answer questions and have time, more time needed, if that is the case, because I've noticed when family members do come, sometimes it's more in-depth because they are really concerned and want to understand how to take care of their loved ones.

JFB: Right, right. And you know, another issue I, I've done that for a family member with a cancer diagnosis. And thankfully I have never had that experience personally. But I can imagine if you are dealing with a diagnosis of cancer, you might kind of be in panic mode and it might be difficult for you to listen and assimilate complex medical information. So absolutely, I was happy to go with my family member and be there and hear all about the procedure that they were going to have, and complications and all kinds of things about the prognosis if the procedure was successful, because it, you know, my family members simply would not have retained it, you know?

SJ: No, not at all.

JFB: Simply because they were sort of stuck on step one. You have cancer. 

SJ: Exactly. And that's why it's very important when you're dealing with those kind of things to, to be able to bring a friend or a family member. And, you know, with the world we live in now, people are all over the United States and international and the example you gave was great. I had a friend who lived out of the country, and the physician that her mother was working with actually called her up on the phone and left her on speakerphone so that they could be able to talk through it together. So, I mean, there's many ways that we can help our patients be able to have, you know, at least a better understanding of what they're going through and what they need to do to have a better quality of life.

JFB: And one thing I want to spend a little bit more time talking about, you raised the issue of shame or pride or a combination of both that I think, you know, again, I'm going to underscore 90% of patients have some difficulty understanding health information. That's most of us. So it's not something that you need to feel ashamed of. It sounds like it's really kind of the normal condition. How do you think we can address that feeling of shame? Patients going to the doctor and feeling like, well, I should be able to understand this, so I'm just not going to ask any questions. I'm just going to hope things turn out all right. 

SJ: I think we have a huge responsibility as health care providers not to make assumptions.

I think we have to start at the basics for our patients. And I think of health care, believe it or not, is an island. And, you know, if you're going to an island and you don't know the language, I mean, that's exactly how it is to navigate this health care system. I mean, we learn a language of communication that we talk to each other, but our patients are, you know, we have to integrate them into it, and we have to use plain language. So we need to communicate clearly and also check for understanding. And we need to create a safe place, a safe place for questions a safe place that has psychological safety and a place that doesn't shame. And so it's about being willing to listen and just take the responsibility that we owe it to our patients. Like I said, to make sure they're successful with their care.

JFB: That, I think, is a perfect transition to talking more about the organizational side of health literacy. I'd love to get your thoughts on what organizations can do, should do, to support health literacy amongst their patients.

SJ: Well, I think part of it is, number one, I think we talked a little bit about the digital aspect of things, or maybe we didn't, but you know, the patient portals are available now where patients can log in and see the information that's available to them, having receptionists or people that meet the patients when they enter the health care system to help them navigate through it, and also to have people available to help patients in our healthcare system fill out paperwork, understand their insurance. I mean, there's so many nuances to just navigating through this health care system. I mean, if you have ever been in a hospital as a patient, that's teaching hospital at that, you see residents and attending physicians and social workers and nurses and, you know, helping them to identify who they’re seeing, what your role is and just making sure it's very clear to the patient what you are doing for them and what they need to do once they leave your organization to continue to have a better quality of life.

JFB: I mean, a lot of it. I'm not saying this just because I am a communicator, but a lot of this sounds like it's about communication primarily. Do you agree with that? 

SJ: You are exactly correct. 

JFB: Okay. 

SJ: Communication is key. 

JFB: Yeah. And I want to give credit to the health care systems and health practices that are medical practices that are out there, because I do see some good examples just from my personal or family member's experiences in the health care system. Some institutions are doing, I think, a pretty good job of creating resources to help people understand, you know, like if you're about to have a major surgery, some of the resources that the health systems have come up with now are pretty great videos and things like that. 

SJ: Yeah. I mean, I think we need to just continue to meet our patients where they are and not expect them to decode our language or try to figure it out. It's all about a partnership. And the partnership means, you know, communication is bidirectional, right? It's, it's what I tell you and it's what you perceive. And so making sure that we have clarity around that is I think, like you said, is the main part that we need to focus on. 

JFB: So I guess even before you get to the solutions part, there first has to be awareness. Is the issue of health literacy an issue that you think is familiar to people who run health systems like you?

SJ: I think it's becoming more and more familiar. Like I said, when Healthy People 2030 updated the definition and the CDC has put out information, I think it's more in our face now. I think it's something we have to consider because when our numbers as far as economically reflect that, you know, patients are coming to the emergency department because they didn't take their medicines correctly, or patients are struggling to understand how to take care of their disease processes. I think it's becoming more and more evident that we need to practice differently. And I think people like you said, organizations are changing their literature. We're making some of the health care literature at levels that are easier to understand, we're making it in different languages. So I think we're trying to transition to meet the needs of the people that utilize our health care systems.

JFB: You know, we talked a bit about how some patients may be reluctant to ask questions. It's not natural for them. They have, you know, a high level of trust in whoever their medical provider is. One thing that I have heard is that it's helpful for medical professionals to, after they have explained something, discuss the treatment plan. To say something to the effect of, now would be a great time for you to ask me any questions that you may have, to sort of invite that or give permission, just so that they're being very clear that not only is it okay, it's desirable for the patients to ask their questions.

SJ: Yeah. And that's where we, you know, talk about the teach-back. An example is if you explain something to a patient who has arthritis and how to take their medicines and what arthritis is, then ask the patient, now, I'm sure you have friends who have arthritis. How would you describe to them what I just described to you? Just to understand that they understand what you said to them. And I think, you know, we are stakeholders too. You know, we have just as much invested in making sure that our patients are successful. So we have to ask and allow that space for them to ask questions and feel comfortable. And again, I know time is always sensitive, but if you don't put the time in on the front, it's going to come back to you on the back end.

JFB: Right. This sure seems like it would be a good investment, making sure your patient knows what to do and why they're doing it upfront. That seems like a good use of time. You mentioned using the talk back technique. You kind of walked through it just now. But would you mind, just for clarity's sake, giving sort of a full description of what that strategy looks like and how you do it?

SJ: Yeah. So, teach-back is what I called it. And so I can give you an example of somebody in my chronic kidney disease clinic where I would say, so you have chronic kidney disease and stage four. And what we're going to focus on for you is to avoid, and I would say normally, nephrotoxic agents, and make sure that you control your hypertension and keep your diabetes and blood sugars under control. A better way to do that is to say, I want to make sure that your kidney disease does not get any worse, and the way to focus on that is for us to work on controlling your blood pressure. Do you have a blood pressure cuff at home? And let them know what their blood pressure range should be, and also controlling your blood sugar? Are you checking your blood sugars at home? What are they running? What do we want them to run? And when I go through this at the end, I want to say to my patient, now let's talk about what we just discussed. So, when you're taking your blood pressure at home, what is the range that it should be in? And I can write that down and they can tell me what they heard me say. Blood sugars. What should your blood sugars be at home? When should you take it? And so I want them to repeat to me again what they heard me say. That way I can verify that they understood what I said, and they can feel comfortable, if anywhere in our conversation they did not grasp what I was trying to say to them to ask for clarification, or having me write it down, or either take a picture of the pill that they need to take at this certain amount of time. So, it helps me to understand if they comprehend it exactly what I wanted them to do regarding their plan of care.

JFB: Gotcha. And you can identify very quickly where the weak spots are, and then go back and reinforce.

SJ: Exactly, exactly.

JFB: Wonderful. Well, Doctor Johnson, I don't have any more prepared questions. Do you have any final thoughts that you want to share on the topic of health literacy? Either speaking to patients, speaking to your colleagues in medicine? 

SJ: Like I said, I think we are all stakeholders in this. I think as providers and hospital systems, the state agency and health plans, I mean, we all need to consider how we are moving through the system. And if you think about it, you know, this is more of a macro level. But if you move down to the micro level, the individual, that's where it's important. And rather that individual is you, your family, friends. I mean, it's important for us to have health care equitable and make sure that our patients understand when they leave, how their health has been affected and what they can do to live their best quality of life. And I think that's what it's all about. Your quality of life. 

JFB: Yeah. Well, Doctor Johnson, thank you so much for joining me. This has been a really illuminating conversation. I hope our listeners will find it helpful. And I just greatly appreciate your time. 

SJ: Thank you.

Episode closing: 29:26

That brings us to the end of this episode of MedBoard Matters. I hope you found it illuminating. Perhaps you even feel motivated to work on health literacy yourself or, if you are a medical professional, in your practice. The North Carolina Medical Board has developed a variety of resources to help, and they are available on our website, which is www.ncmedboard.org. We have digital brochures on Health Literacy and Informed Consent and many, many other helpful resources in our online Smart Patient Toolkit. Also, we have created a downloadable one page flyer for our licensees and any other medical professionals who might want it. The flyer can be posted in patient exam rooms or waiting rooms to help your patients learn about health literacy and why it is so important. We have put links to these resources on our show page, which you can find at www.ncmedboard.org/podcast. If you have any comments, questions or suggestions, please send them our way by sending an email to podcast@ncmedboard.org. Thank you for listening and I hope you will join me again.