What is health literacy and why does it matter? In this episode, Dr. Bjorn Mercer talks to Assistant Dean and nurse Dr. Stacey Malinowski about how strong health literacy skills helps people make well-informed decisions about their health. Learn why healthcare providers must work to assess their patients’ health literacy, ensure they’re presenting information simply and clearly, and making sure patients feel comfortable asking questions. Learn tips to improve your own health literacy by writing down questions ahead of your appointment, repeating back information to your doctor, bringing along a reliable family member or friend, keeping a medical binder, and more.
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Dr. Bjorn Mercer: Hello, my name is Dr. Bjorn Mercer. And today we’re talking to Stacey Malinowski, Assistant Dean in the School of Health Sciences. And today we’re talking about health literacy. Welcome Stacey.
Dr. Stacey Malinowski: Hi, thanks for having me today.
Dr. Bjorn Mercer: Excellent. And health literacy, super important. One’s health is really one of the most important things we do throughout our lives. And it’s amazing how often people and we get it wrong. It’s one of those realities. What is how health literacy and why does it matter?
Dr. Stacey Malinowski: That’s a great question. I think a lot of people don’t understand that health literacy is even a thing. So what health literacy is, is it refers to the degree in which any person has not only the ability to find health information because it’s everywhere, but to really understand it, to use it, to make good decisions from it, to carry it out in their everyday lives. And not only for themselves but for their family members and other people they may be providing care to.
And why it’s important is because this health literacy helps us make a really well-informed decision about our health care. Because if we don’t, it has a lot of adverse effects. So poor health outcomes can come for people who have low health literacy, research shows us poor health outcomes.
These folks tend to misuse medications, not on purpose just accidentally because they don’t understand. They are less likely to be compliant with all aspects of their treatment given to them by their healthcare providers. And it costs us a lot of money. And one number I read said that low health literacy actually costs the United States over a trillion dollars a year, inappropriate medications, missed opportunities for enhanced care.
And with all of the health information that’s out there today, it is actually harder and harder to be health literate because it’s really hard to sift through all those conflicting messages and actually figure out what’s fact and what’s gimmick.
Dr. Bjorn Mercer: And I’m glad you brought that up because health literacy has so many aspects to it. So, just like you said, besides medications or even how much you eat and what your diet is that relates to your overall health literacy. If you have something wrong with you, should you automatically go to Google and type it in?
Dr. Stacey Malinowski: That’s a very dangerous thing to do.
Dr. Bjorn Mercer: It is. So, just as an example, what can happen if you’re trying to self-diagnose?
Dr. Stacey Malinowski: You see memes about it, you go to WebMD and no matter what you put in, the ultimate outcome is death. Because there’s so many different diseases. There’s so many diseases that on the outside can look like each other. And there’s so many things that really can be very serious that have very mild symptoms.
And so, you could do one or two things read about something, be like, “Oh, I just pulled a muscle.” When in reality it’s actually very serious and you’re about to have a heart attack. Or you have this nagging headache and you automatically assume you have a brain tumor when really maybe you need glasses and your eyes are straining from too much screen time. Doctors and healthcare providers have received a lot of education and go to school for a very long time to help make these distinctions for us.
Dr. Bjorn Mercer: And that’s perfect. In many ways we should always do our own research. Number one, whenever I talk to anybody about just general information literacy, always do your own research but you got to be very, very careful. And so that leads us to the second question is, how does health literacy relate to overall literacy levels?
Dr. Stacey Malinowski: Good question. Because when we think of, if somebody is literate or not, we think can they read, but there’s really more to it than that. It’s very multifaceted and it also encompasses numeracy skills and other functions.
So, about 80% of adult Americans are literate and can read and write and do these basic skills, but only 12% of Americans are actually considered to have good health literacy skills. So, that is a really big gap right there. What that tells me as a healthcare provider is that we really need to get to know our patients and audiences so we can provide them the right information at the right time. There’s a lot of different risk factors for having low health literacy.
And some things are equated with low general literacy level, such as living below the poverty level, certain race ethnicities, certain types of disabilities. If English is not your primary language and you’re seeking healthcare in America, that can also affect your health literacy.
But we also need to think about our patients that are completely literate. Think about older adults. They can read, they can write, they have all their skills, but think about how much technology has changed. So they may have a very good understanding, but just the technologies, the new treatments, the medications, there’s so much constantly evolving that somebody who has not kept up with medical terminology and medical research now falls into the category of having a low health literacy.
Dr. Bjorn Mercer: And that’s perfect. Part of my own health literacy is always keeping up on diet and what we put in our bodies. And even over my lifetime, the food pyramid has changed. And if somebody remembers back to their youth or years ago and they’re like, “Well, this is on the food pyramid.” Science changes, because as science progresses, more things are realized and more things are then accepted, versus in the past where some things were obviously of the best of intentions and trying to be supported by science, other things are improved. How do you deal with people who may be stuck in the past or learned one thing about one aspect of their health literacy and can’t quite let it go?
Dr. Stacey Malinowski: Well, that’s a great question. I guess I would want to get to the root of their understanding of the issue and find out what it is that they’re holding onto. Is it something that works for them? And maybe if that’s the case, maybe that’s okay. But we also need to find ways we can help them explore other options, other new health information that’s out there and find the emotion behind it. Because whether somebody’s health literate or not, we can’t really expect anybody to fully understand or digest health information if it’s a very complex topic or if they’re too emotionally charged to do so.
Dr. Bjorn Mercer: And I’m glad you brought in the emotion aspect of it because so much about one’s health and maybe how you view yourself or even how they view things like food, it becomes very emotional. And then even sometimes how people trust experts, some people trust doctors to have all the right answers all the time. It’s obviously not realistic. And other times people will mistrust doctors so much that they won’t even listen to what they say, which is obviously the two polar extremes, that’s not a good idea either. And so, what can patients do to increase their own health literacy?
Dr. Stacey Malinowski: That’s a great question. First, patients need to understand that they may believe that they fully understand what’s going on, but there’s always more information out there and they need to ask questions. A lot of patients may be embarrassed to ask questions, but they need to understand that there probably isn’t any question a healthcare provider hasn’t heard before or there isn’t something more gross, more embarrassing, more private, that they haven’t heard. So, they should never, ever, ever be embarrassed to ask questions. It’s their health, we want to encourage them to own it, take charge of it, and ask the questions that they need.
I always suggest that patients should repeat back to what their healthcare provider said in their own words. When the doctor says, “Do you understand?” Don’t just say, “Yes or no,” say, “Well, what I’m hearing you telling me is that this new medication for my blood pressure, I need take it twice a day, but I need to check my heart rate before I do that.” Just so they can close the loop on that communication and make sure they know exactly what they’re supposed to do.
If someone feels maybe they’re going to be receiving a new diagnosis or if they are someone who gets complex treatments, take a family member or a close friend with you. That is so important, so they can take notes for you. They’re going to hear things that you don’t hear, especially if it is an emotionally charged topic or if it’s complex, two sets of ears are always better than one.
They can keep a running list of questions about their disease or diagnosis because I’m sure you’ve done it too. You’ve had this great conversation with your doctor or your nurse and then you walk out and you’re like, “Oh, I should have asked them this.” Keep a list between your next appointment or think about, “I have an appointment next week. Here’s the things I want to ask,” jot them down. It’s going to help your visit go more smoothly. And you won’t forget anything that you had wanted to ask.
If patients’ English is not their first language, bring a trusted friend that can help translate or in the hospitals or healthcare settings you can ask for a translator or interpreter so that you are getting the information in your preferred language.
They can ask for written information, take it home with you because you’re not going to absorb everything that your provider tells you in one setting. So, if you have those resources that the doctor’s given you, you know one, they’re a trusted resource, they’ve been vetted, you know it’s good information. And then you have it to refer back to, you have that to share with your support system so they can read it, too.
I think the most important thing is not to believe everything you read or see on social media or on the internet. That’s important too.
Dr. Bjorn Mercer: I completely agree. And especially with believing what you read on social media, the internet, et cetera. I mean, the authority of the information you find, you have to take into great consideration. You can’t go to just somebody’s blog and be like, “Oh, well it says at Gary’s blog, this is going to happen X, Y, Z.” And it’s like, “Well, you should really go to the most trusted sources out there.” And I really liked what you said about when you go to the doctor.
So, just as an example, in my own life, my wife is an occupational therapist. And so, she handles most of the medical stuff because she remembers it. Now if I had to handle it, I would take a piece of paper and I would write everything down, because my brain just doesn’t remember medical terms and medical concepts very well because I’m not medically trained.
And if you are lucky enough to know someone or have a spouse who is medical, that can help so much. And just like you said, bring a friend. If whatever you’re going through, potentially is emotional for you that can sometimes deafen you to hearing things and so having that second pair of ears can really, really help.
Dr. Stacey Malinowski: Absolutely. I have a family member who has a medical binder, so she will take her list of questions to her appointment. She will take notes on it. She’ll keep that in her binder, she’ll print out a summary of her visit from her online portal and any lab results. And she has everything in a binder because as you age and then you have all these specialists, so she might see six, seven doctors.
So, she has everything in one place and she always says, “Okay, if anything ever happens to me, grab the binder, take the binder to the hospital.” Because it’s got everything there and any care provider that picks up her case can see everything that’s happened so far. It’s really a great idea. I should follow this advice, this is something I haven’t done yet, but I think it’s great.
Dr. Bjorn Mercer: No, that actually is really, really good advice. And I think oftentimes when people think of their own health, they think, “You know what, I’m good, for the most part.” And that they push it off, not to be genderist, but I think a lot of men push off a lot of their health things, just thinking it’s fine. Or, if there’s something wrong, they’re like, “Well it doesn’t stop me from doing anything so it’s fine.”
And, in many ways, we need to all be very careful of our health because we live in a time where so much is curable or certain medicine that can help us live better lives. But if we wait and wait and wait, there’s only so much medicine can do these days.
Dr. Stacey Malinowski: That’s very true. So patients getting their annual physical, even if you’re feel good, get your physical every year because you might not know that, “Whoa, I need this screening starting at age this and this screening starting at age that,” but if you go to see your doctor, at least just once a year, they can tell you, “Hey, it’s time for you to have this, it’s time for you to have that. We need to start thinking about this.” I mean, they’re really your care partner, they’re really there to help you take care of you.
Dr. Bjorn Mercer: And I completely agree. And so, this leads us to our last question is, what can health providers do to ensure they’re providing information that patients can understand?
Dr. Stacey Malinowski: That’s a very important question. So first, we need to know our patient. We need to know what is their overall health literacy and literacy level? You can have somebody who actually is illiterate but a very high verbal fluency, who is very good at making it through life and fooling other people they can read. So, we need to know what can they read and what can they actually understand?
So, we need to provide and have available different types of resources for all of our patients. So they can be age appropriate, culturally appropriate. We need to find out our patient’s preferred languages and provide them with health information in their language of their choosing.
When we’re teaching information, we need to be sure we’re speaking slowly, and we need to use simple language. If you go in because you keep having heartburn and your doctor tells you have to go get an Esophagogastroduodenoscopy, you might just shake your head and say, “Okay.” But maybe I should tell you know, we’re going to take a thin camera, put you to sleep, insert it into your throat and look down and see what’s going on. That might make a little more sense. So, the language that we use is very, very important.
We need to consider the amount of information that we’re teaching our patients. We can’t overload them and expect them to retain it. So it’s hard. Healthcare providers in an outpatient setting are so busy that they only have so many minutes per patient. You have a new diagnosis, they may throw it all right at you.
So, we can consider breaking down that information into what we call the chunking method. So, let’s say I just have diagnosed you with diabetes. What are the most important things that I need you to know today? That’s what we need to focus on. And then we need to schedule follow up to cover the rest. But, putting together relevant, the most important and similar information is very, very important.
Providing the hand-out materials, especially that have pictures, pictures are a great way of conveying health information. And you may notice now, if you’ve looked at your prescription bottles lately, they have symbols on them to help organize the information.
And then we need to make sure our patients actually understand what we’re telling them. So, I’m sure you’ve been at the doctor and gotten some information they say, “Do you understand? Do you have any questions?” Yes or no questions. We need to be asking open-ended questions. “Okay, so we just went over a lot of information. How many times a day are you going to take your blood pressure medication?”; “Okay. What dietary changes are you going to make as a result of what we talked about today?”; “Or can you tell me what I told you about this test that you have to have?”
We’ve got to assess for their understanding before we send them out the door to make sure that they really are going to follow up and follow up appropriately. And we don’t want to inadvertently set them up for any additional harm by sending them out with the wrong or misinterpreted information.
Dr. Bjorn Mercer: And I like that because, I’ll just say I’ve been lucky enough that I haven’t had really any health issues, but I know that people have and it can be very difficult navigating all that information. And so really repeating that and really going over all that information is so important, especially, just like you said, each healthcare provider or doctor or PA or NP, they only have X number of minutes per patient. But that as a patient, you need to make sure that they’re not rushing through you, just to get to the next one because this is your time and this is your life and your health.
Dr. Stacey Malinowski: Yeah. That’s a great point. And also considering other sources of information, pharmacists are amazing resources to have, whenever you pick up a prescription, they ask, “Oh, do you have any questions for the pharmacist?” And I worked at a pharmacy during nursing school and everybody always said, “No.” But some of these medications are very complex or they’re new, take advantage of the pharmacist, ask them the questions.
Another great resource because the doctors again are busy, are a lot of healthcare systems may have navigators, patient navigators. So especially if you are about to embark on a very complex healthcare journey, maybe such as a diagnosis of cancer or heart failure, having a navigator at the health system that can help explain to you, make sure you’re set up for your appointments, they make sure you have your prescriptions and that they’re filled. Seeing if your healthcare organization has navigators is a great way to extend the support system.
Dr. Bjorn Mercer: And those are all absolutely wonderful suggestions. And for you, is there any one area that you’d recommend that people study themselves? Because health is, it’s too big, it’s too complex for all of us to become experts. But is there one aspect of health literacy or one’s health that you would recommend people take a little more time to learn about?
Dr. Stacey Malinowski: That’s a great question. Can I have two answers? Because I have two that I think are very important. So I think the first one is preventative care, knowing what you should be having done. And, again, just knowing adults should have checkups every year. You think they stop when you’re a kid and you’re all grown up now. See your doctor every year because they can help keep you on track because those preventative screenings for breast cancer, colon cancer, there now can do screenings for lung cancer for certain high-risk patients. Those are so crucial for catching those oftentimes terminal diseases early.
And then the other thing and I feel like we always go back to the is diet. Know what is good to put into your body because food can really can help you and heal you, and it can harm you just as much.
Dr. Bjorn Mercer: Exactly. And we probably talk about it every single time we have a podcast and then I talked about it with Dr. Jameelah [Powell]. Also because diet is so important, diet and your activity level. And it’s not that again, I always say, you don’t have to become a vegetarian. You can still eat meat and enjoy meat, but just to have a good amount of healthy food going in and especially nutrient-rich food. There’s a lot of food that is nutrient-poor, where it’s food, but it doesn’t do anything for you.
And then also just activity level. We all have to figure out how we stay active throughout our lives. And again, it doesn’t mean that you’re going to be doing CrossFit and that you’re an extreme athlete, nothing at all. But to make sure that you’re moving and you’re challenging your body and especially weight training. Everybody should do a certain amount of weight training because really ensuring that your muscles are strong, besides your heart health, of course, with a certain amount of cardio, is so important.
Dr. Stacey Malinowski: It is, it helps us age gracefully. It helps extend our health and our longevity. Americans are living a really long time, but do you want to be 90 with a great quality of life or do you want to be 90 and not so much because you haven’t taken care of your body along the way. But, yeah, strength training so important as part of setting your body up for long-term success.
Dr. Bjorn Mercer: Exactly. And just like you said, so many of us are living a long time and the average age is 78 to 80, depending on your gender. We in the US.. do not have the longest age average as are other countries. And when you look at American culture, there’s so much that’s stressful about the work culture, driving and commuting, the types of food that are available, I should say to people at times, the easy food that’s available.
So, there’s a lot of things that go against living a healthy life, if that makes sense. If you just go along with what is presented to you. And that’s why, like you said, health literacy is so important because it’s making those right choices.
If you have a full day and you’re driving, what are you going to pick up to eat? It’s very easy just to pick up, say a sandwich or a burger. And if you do that too many times, that’s a lot of sodium. That’s a lot of high fat that you’re putting into your body, which again, if you do that every once in a while, totally fine. But if you do that more often than not, well, it’ll start taking a toll.
Dr. Stacey Malinowski: I agree. Those cumulative effects of all the choices that we make, the positive ones and the negative ones. So you’ve got to make that next best choice for you. And so, having a good health literacy level can help you understand, what’s that next best choice that I could make for what I’m going to put in my mouth, what I’m going to do for my exercise today, or even just getting up and doing the exercise, whatever it might be. So, yeah, I agree with you a hundred percent.
Dr. Bjorn Mercer: Exactly. And so absolutely wonderful conversation. Any final words, Stacey?
Dr. Stacey Malinowski: If I could stress anything, it’s that just don’t ever be afraid to take charge of your own health and to ask questions. Ask about yourself, ask for your loved ones, because you are going to be your own best advocate. And to do so, you have to have all the knowledge possible. So don’t be scared to ask questions, there’s nothing that we haven’t heard before.
Dr. Bjorn Mercer: Perfect and excellent final words. And today we’re speaking with Stacey Malinowski, Assistant Dean in the School of Health Sciences about health literacy. And, of course, my name is Dr. Bjorn Mercer. And thank you for listening.