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Why Health Literacy Is Important for People With Breast Cancer
Jenni Sheng, M.D.
January 6, 2021

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Dr. Jenni Sheng is assistant professor of oncology at the Johns Hopkins University School of Medicine. Dr. Sheng mainly treats people diagnosed with breast cancer and helps them live with, through, and beyond cancer by working with her patients to create the best treatment plans and manage any side effects treatment may cause.

Dr. Sheng is also a research member of GRASP — Guiding Researchers and Advocates to Scientific Partnerships — a nonprofit that connects cancer researchers and advocates so they can learn from each other.

Listen to the episode to hear Dr. Sheng explain:

  • what health literacy is and how having good health literacy skills can help people diagnosed with breast cancer
  • how people can improve their health literacy skills
  • how to navigate online sources of health information

Running time: 21:51

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Show Full Transcript

Jamie DePolo: Hello! Thanks for listening.

Our guest today is Dr. Jenni Sheng, assistant professor of oncology at the Johns Hopkins University School of Medicine. Dr. Sheng mainly treats people diagnosed with breast cancer and helps them live with, through, and beyond cancer by working with her patients to create the best treatment plans and manage any side effects treatment may cause.

Dr. Sheng is also a research member of GRASP — Guiding Researchers and Advocates to Scientific Partnerships — a nonprofit that connects cancer researchers and advocates so they can learn from each other. Dr. Sheng joins us today to talk about health literacy and why it’s so important for anyone who’s been diagnosed with breast cancer.

Dr. Sheng, welcome to the podcast.

Dr. Jenni Sheng: Thanks so much for having me, Jamie. It’s a pleasure to be here, and I’m looking forward to talking more about how we can address health literacy and some strategies we can implement to improve that.

Jamie DePolo: Excellent, because my first question — sort of the lead in — is that according to statistics from the U.S. Department of Health and Human Services, only about 12% of adults in the United States really have good health literacy. So, conversely, that means that about 88% of people may lack some of the skills they need to really manage their health well. So, in case anybody doesn’t know, can you explain to us what health literacy is?

Dr. Jenni Sheng: That is a great question, and it’s a good place to start. So, I will give you the formal definition of what health literacy is, and then I’m going to tell you what I think it practically means.

So, health literacy was a term that was coined by the Institute of Medicine, which is a nonprofit organization that works outside of the government, and their goal is to provide unbiased advice to the public and decision makers. So, in essence, they defined health literacy as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. 

So, for example, it includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor’s directions, consent forms — and those are the kind of nitty gritty, day-to-day things that need to be done by a patient in order to ensure that they’re getting the best healthcare.

Jamie DePolo: Okay. So, how did those statistics — the 12 and the 88 — how do those match up from what you’ve seen in your practice, personally? Does that sound about right?

Dr. Jenni Sheng: So, I will say that I think the statistics are an average across the country, and they really don’t address specific pockets where we know that health literacy may be lower and certain areas where we know it will be higher. So, health literacy as a whole, it’s a common thread through all of our programs, and a large portion of the people we serve may be medically underserved. And so the reasons for limited literacy skills might be related to cognitive decline in older patients, learning disabilities, lack of educational opportunity, and also just the simple concept of having reading abilities decline as one ages.

So, I will say that in my practice I do think that the health literacy is higher than 12%, but I will argue that in the population that I serve — which tends to be more in a community practice, closer to the suburbs — it does seem to be higher than that. But I do practice and do research out of downtown Baltimore city as well, and so we know that the health literacy in that population is lower. 

I think the important thing to know is that the assumption should be that we should be assessing people for health literacy, and that we should acknowledge that the majority of people may not have all the skills to interpret medical information and to ensure that they’re getting the best healthcare.

Jamie DePolo: Okay. Let’s get some specific examples. So, how does having good health literacy, or not having good health literacy — how would that affect someone who’s been diagnosed with breast cancer? Could you give us a few examples, specifically?

Dr. Jenni Sheng: Absolutely, Jamie. So, breast cancer patients are faced with numerous complex decisions that they have to make and a huge amount of information. 

So, for instance, accessing healthcare services is one of the main issues that someone who’s diagnosed with cancer has to be able to deal with. So, for instance, I’m a medical oncologist. My job is to figure out if chemotherapy or other therapies are appropriate, but I also work with a surgical oncologist and a radiation oncologist, and so this care is complex. When you’re given a breast cancer diagnosis, you may start to not just see one type of doctor. You may see all of us. You may need to see a genetic counselor, as well. And so, it's so complex, and sometimes accessing those services and understanding who to go to can truly be a challenge.

Also, I think that analyzing the risks and the benefits of certain therapies can be truly challenging. I know from my experience with my patients, when I’m describing the benefits of a certain chemotherapy or a certain endocrine therapy, for instance, that I’ll talk about what I think the impact is on survival or on the risk of a cancer coming back. And really having someone appreciate that and to understand that in their own terms is really, really important. 

I’ll give you another example: I prescribe a lot of medication, and understanding how to take a medication is extremely important. So, if I’m prescribing an oral therapy, making sure that someone knows how much to take, what the name of the medication is, what it’s used for, is critical. And when I’m giving someone chemotherapy, it’s important for them to understand: This is how you get it. This is how it’s administered. This is how often you have to come in. What are the other things, like blood work, that might be related to it? So, I’m giving a huge amount of information to patients each time. 

On top of that, I’m giving them test information. So, they may get blood work. They may get a scan — whether it’s a CT scan, a MRI, a PET scan, et cetera. And I have to be able to relay those results, but it’s up to the patient to really interpret the information that I’m giving them. 

So, as you can imagine, patients have a lot to absorb and to really internalize when I’m explaining all of the aspects of breast cancer care.

Jamie DePolo: Right, and all that’s happening probably — I’m not going to say this across the board, but in many cases — somebody may be very upset, frightened, scared, anxious. So, they may not be super focused on what you’re saying anyway because inside they’re thinking, “Oh, my gosh. I have cancer. Oh, my gosh. I have cancer.” So, they may be a little bit distracted, and then trying to also, at the same time, absorb all that and process all that information.

Dr. Jenni Sheng: Yes, Jamie. And I think that you highlight a really important aspect of this, which is when you're told you have a breast cancer diagnosis, there is a slew of emotions that you are dealing with. And adding on top of that the need to understand medical information really makes that difficult. I think that some studies have shown that during these visits, some of our patients just retain — and most of our patients retain — maybe 10 to 20% of the information that we’re relaying to them. And so, when you really think about that, you have to think about, “What is the most important information that I need to convey?” And from a patient perspective, the thought is, “What did I get from what the doctor was telling me?”

Jamie DePolo: Right. Right. Okay. So, I — and I’m assuming, too — that if somebody does have pretty good health literacy, even if they’re distracted, that can help them absorb and process a little bit more of the information than somebody who’s distracted and, say, has very poor health literacy.

Dr. Jenni Sheng: Absolutely. I think that you really have to take those together. You have to address this emotional aspect of what’s going on when you get a breast cancer diagnosis, and then you have to also be able to understand how does this person process information?

And the important thing to know is that there’s different components of health literacy. So, for instance, there are individuals who are very visually literate. What that means is that they’re able to understand visual information and graphs really well. There’s some people who are more computer literate — they’re able to look things up on their phone or their computer very quickly and get that information. There’s also numerically or computationally literate individuals. That means that they’re actually able to reason numerically or able to understand calculations. And so really to think about health literacy as a whole, there’s actually many components, and to be entirely skillful in all of those domains is really a challenge.

Jamie DePolo: Oh, I bet. I bet. Now I’ve also read that people who have lower health literacy are more likely to say they’re in poor health and they’re also less likely to take advantage of preventive services — maybe, like, screening mammograms. And I’m assuming this is because maybe they don’t see the value in it or understand the value. So, do you see this in your practice? Does that sound accurate? And again, I’m not trying to generalize. I’m just... you know how sometimes studies find things, but then in the real world they may be a little bit different. So, I’m trying to reconcile those two things.

Dr. Jenni Sheng: I do think that the studies do parallel what I see in clinic. So, studies have shown that low literacy poorly impacts the incidence of cancer, dying from cancer — which is called mortality — and quality of life. So, for instance, you mentioned screening. So, cancer screening information may be ineffective if an individual does not understand the importance of doing that, or what are the potential results from that and the actions that need to be taken after that. And so, if screening isn’t done really at a prompt time or in the right manner, then patients may actually be diagnosed at a later stage.

And treatment options actually may not be fully understood, as well. So, some patients may not receive certain treatments or decide to pursue certain treatments because they don’t actually fully understand perhaps the risks or the benefits. 

Or sometimes there’s actually this other aspect of health literacy, which is the cultural context and understanding where people are coming from. And that’s why it’s so important to really get to know each person at an individual level: What is their family history? Do they know anyone who’s been diagnosed with breast cancer? How have they done? What kind of treatments did they get? And asking that individual patient how they feel about it, because that can oftentimes influence the type of information that they’re receiving and how they’re processing that information, as well.

Jamie DePolo: Okay. Okay. So, my own personal suspicion is that a lot of people really don’t think about their level of health literacy unless they’re diagnosed with a serious disease, because why would they? They really don’t need to use it. So, how can people improve their health literacy?

Dr. Jenni Sheng: So, I think there are a few things that patients can do. And I do think it’s a two-way street — I think as providers, whether you’re a doctor or an advanced care practitioner or a nurse, we all need to take steps to improve health literacy. So, I think from a provider perspective, I think identifying those literacy levels is really important. And trying to simplify the language, and using shorter sentences, or even defining some of those technical terms that we’re using, are really important.

But from a patient perspective, in terms of things that one can take to really improve that, I think there are a few things. So, number one, I think that you should ask questions, and you should feel comfortable doing that. There is no question that is too silly, and there is no question that should really go unturned when it comes to your life, your health, understanding breast cancer, and your treatment options. 

And it’s also okay to tell a doctor to just slow down a little bit or, “Do you mind repeating that again?” I, personally, talk pretty quickly. So, I have to be really mindful when I’m talking to someone who’s just gotten a breast cancer diagnosis — you know, asking them how they feel about the information I just told them and if they have questions about it. Not all doctors can do that. Sometimes we also have time constraints, and so I really urge patients to advocate for themselves.

I also recommend, if your doctor is using a word that you don’t understand and they’ve now repeated it 2 or 3 times, just ask them, “What does that word mean?” Also, you should take notes in a way that you understand them. So, for instance, sometimes it’s a checklist of items, or sometimes it is a graph, or something like that, that really helps you to better understand the process. 

Another option is — perhaps writing or reading is truly a challenge, and I think you should feel comfortable telling your doctor that — perhaps requesting a visual, saying, “I really understand pictures better than words,” or requesting a video. I think this is... I’m really impressed by the extent of materials that we have now that really suit different types of learning styles. So, you can ask the doctor, “Is there a video that can explain what you’ve just mentioned to me?” And so, oftentimes, we can send a link or provide a link that does that. 

And, lastly, I think you can always repeat what the doctor is saying to you instead of perhaps — sometimes I see people nodding their head or saying yes, or moving onwards. Just repeat what that doctor just spent 2 minutes talking to you about to make sure that you’re processing it and understanding it in the same way.

Jamie DePolo: Okay. Sort of putting it into your own words and then the doctor can tell you if you’re understanding correctly.

Dr. Jenni Sheng: Absolutely. Yes.

Jamie DePolo: Okay. Now, so we’ve talked a bit — quite a bit, there — about patients. Now, do you think it makes sense for everyone, like, say, somebody who’s never had a cancer diagnosis, to improve their health literacy? And I’m thinking of it especially now, as we’re living in this time of pandemic — a vaccine, or vaccines, plural, seems imminent — and a lot of words are being thrown about — mRNA vaccines, you know, this kind of vaccine. So, does it make sense for us all to kind of sort of study up?

Dr. Jenni Sheng: Jamie, absolutely. And I think that’s something even I have to keep up with, even though I am a physician. Because I think that anything that falls out of your range of knowledge is something that requires some work. And for instance, health literacy really is important for all people because we know that when we really, fully understand — perhaps a medical condition, or a treatment option, or a screening measure, or a vaccine — that that can truly impact us at an individual level and a societal level. There are implications with health literacy and the economy, as well as employment, and education, and community activities, and just overall well-being. 

So, I think that it really falls on all of us to make a concerted effort. It doesn’t matter if you’re on the provider end or the patient end. And it doesn’t just focus on breast cancer, I think that overall health should also be a priority. Because we know that low health literacy can impact the number of people who get flu shots, it can impact diabetes management, and use of prescription drugs. So, I think that it has implications in many, many areas in medicine.

Jamie DePolo: Okay. Thank you. So, my last question is really about online information because — again, this is my suspicion, not proven by research — but that a lot of people, if they want to improve their health literacy, they’re going to do an internet search and sort of look at the first few results that come up and call it good. But I’ve also seen — in my own family — I’ve seen this approach cause really big problems, because perhaps the sources weren’t the best.

Obviously, full disclosure, is an online source of breast cancer information, but I am very proud to say that all our information is reviewed by medical experts before it’s put online. So, could you tell us, from your perspective, how is it best to navigate online health information like this, if someone’s really trying to improve their health literacy? And especially now, as I said, in this pandemic time, online research seems to be the easiest — and probably for some folks the only way to go, because you can’t go anywhere. How is the best way to sort through all that?

Dr. Jenni Sheng: Sure. So, foremost, you mentioned, and I think something very simple that one can do is to really vet the types of websites. So, if you look at even the end of a website, if you look at the URL. For instance, if it says “.org,” that identifies that there is a nonprofit organization that is really behind that website. And that usually means it’s a professional group — it may be a scientific, medical, or research society, or an advocacy group. If you see “.gov,” that means that it identifies a U.S. government agency. And if it says “.edu,” that identifies an educational institution — it could be a school, a college, or a university.

Now, you will often see a “.com,” which means that it’s commercial. So, I always tell people to be a little bit more cautious with those websites. And I think some simple steps are asking five questions whenever you’re looking at some online health site or downloading an app. Which is, number one: you want to ask, “Who’s running or creating this site or app?” And number two, you want to say, “What is the site or app promising or offering?” And three, you should ask, “When was this information written? When was it reviewed? Is it up to date? Is it current with the medical information that’s available?” Next, you should ask, “Where this information is coming from — is it based on scientific research? Is this anecdotal,” which means it comes from someone’s personal experience. And lastly, always, “Why? Why does this site exist? What’s its mission?” Is it trying to sell you something? Is it trying to convince you of something?

And so, I think those are some really simple steps that allows you to have a more thoughtful approach when looking at online materials, and that “who, what, when, why, where” type of reasoning can really help people to filter through some of those websites.

Jamie DePolo: Excellent. Dr. Sheng, thank you so much. This has been really informative and helpful. I appreciate your insights.

Dr. Jenni Sheng: Absolutely. It’s a pleasure. Thank you so much for really conducting a podcast on such an important topic, Jamie.

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