HLOL Podcast Transcripts

Health Literacy

When Communicating Risk, Consider What Patients Need and Want to Know (HLOL #102)

Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some really remarkable people and hear about what health literacy is, why it matters and ways we all can help improve health understanding.

Today I’m talking with Dr. Brian Zikmund-Fisher, who is an assistant professor in the Department of Health Behavior and Health Education at University of Michigan School of Public Health.

He is also a research professor in their internal medicine department and is affiliated with several other of the university’s programs.

With a background in decision psychology and behavioral economics, Dr. Zikmund-Fisher teaches, researches and writes about meaningful ways to communicate risk and other number-based health information.

I recently was at a health literacy conference and heard him speak about numeracy. I was so impressed that I invited Brian to be a guest on Health Literacy Out Loud. Welcome.

Dr. Zikmund-Fisher: Thank you.

Helen: Your focus at the conference had a lot to do with risk communication. A takeaway message that I got from this is that it’s not all the same. We don’t always communicate risk information in just one way in all situations. Tell us more about that.

Dr. Zikmund-Fisher: It’s worth reminding ourselves that we always talk about risk for a reason. Sometimes we talk about risk because we need to know that something bad might happen. It may be rare, but we have to be aware that risks exist.

This is the classic case that comes to my mind. I am a parent, and my daughter had to go into surgery for ear tubes, which of course is a really minor procedure.

Helen: Not if you’re the parent.

Dr. Zikmund-Fisher: Yes, but not if you’re the parent, and it also involves anesthesia. For informed consent purposes, as well as just being a fully-informed participant in healthcare, we need to understand that going under anesthesia has some risk associated with it so that we don’t just do it for no reason at all.

Helen: How did you want to hear about that risk for your child when she needed ear tubes?

Dr. Zikmund-Fisher: When my daughter had the surgery, I didn’t need to hear that it’s a one in 1 million chance or one in 10,000 chance. I needed to know that it was a really unlikely event that something would happen. Otherwise, I wouldn’t have confidence in her having the procedure.

Quantitative numerical communication of the risk really wasn’t the issue. I just needed to be aware of what could happen and for it to be made clear to me that it was going to be a very rare event that the team was aware of and doing everything they could to prevent.

Helen: In that case, was somebody on the team just saying to you, “This is a very rare event”? Was that sufficient, or did you need tables, pie charts, numbers or data?

Dr. Zikmund-Fisher: No, I certainly didn’t need pie charts. That’s not to say that there aren’t times I might want more detail.

If I was deciding between a couple of different procedures and maybe one of them is riskier than another one, or if there were different types of anesthesia and we could choose between them, then maybe I would want some more detail to be able to make that comparison of just how much more risky it is.

I believe the need that we have as participants in our healthcare to know what could happen to us is much less about numbers and much more about understanding the reality that certain behaviors or procedures carry risk with them.

Helen: I’ve seen a number of your papers. You’re a wonderful and prolific writer about numeracy. There’s a paper that I’m looking at right now called “The Right Tool is What They Need, Not What We Have: The Taxonomy of Appropriate Levels of Precision in Patient Risk Communication.” It looks like it came out of Medical Care Research and Review in 2013.

There’s a table in there about patients’ needs and congruent types of risk information. Is that where you’re heading with this? You talked about different kinds of needs. Maybe we should go through that a bit, starting with something fairly straightforward like your daughter’s ear surgery.

Dr. Zikmund-Fisher: That in fact is the example I have in mind for the top part of that table. I see patients as having a spectrum of needs when they think about risk. The simplest need is to become aware of risk. The surgery example that I just talked about is a great example of that.

I just need to know that it’s possible that, because my child is going under anesthesia, that there could be some anesthesia-related complications.

Helen: You just want to know that it’s possible. That’s sufficient. Would you bump it up the ladder here? What else happens?

Dr. Zikmund-Fisher: If I’m choosing between two different surgeries and one of them is simply riskier than the other one, and if there are no other differences between them, then all I need to know is that that one is the riskier option.

Another example of this is allergy medication. A few years ago, there was a new influx of over-the-counter allergy medications. One of their main selling points was that they caused less drowsiness.

I didn’t know numbers about how frequently people had drowsiness from those medications, but it was useful to know that this was going to be a less drowsy medication than that one.

That’s what I call relative possibility. It’s not probability. It’s not a numerical representation of risk, but it helps me order things. This medication is going to make me drowsier than that one, or this treatment might have a higher success rate than that one. That’s the next step of the ladder.

Helen: It’s like comparing apples to applesauce, perhaps.

Dr. Zikmund-Fisher: Exactly. The third step in that table is helping people to motivate themselves to act or know that they don’t need to act about a risk. Anybody who wants to can go online and find online risk calculators for your cardiovascular disease, breast cancer or prostate cancer.

Helen: Are those where you enter a lot of data and all of a sudden, ta-da, there’s a number?

Dr. Zikmund-Fisher: Ta-da, and there’s a number. I’ll be honest. When I use those, I get my number and it usually isn’t actually that helpful. I’m not going to a risk calculator to get a number. I’m going to a risk calculator to answer the question I think many of us ask, which is, “Am I okay or at elevated risk and need to do something about that?”

Helen: Would a person do that in order to decide whether to go to the doctor? I can’t quite imagine going online rather than going to a doctor if you’re really worried about something.

Dr. Zikmund-Fisher: If you’re really worried about it, that’s true. Take an example of a middle-aged woman who is concerned about breast cancer. Let’s say she had a relative who had breast cancer and she doesn’t know if she is at risk.

Every woman knows that they are at some risk of developing breast cancer, but we may not know whether our personal history makes us more or less at risk than other people.

Helen: Thank you for that. It puts it into context. It’s not such an immediate problem, but it’s more theoretic at that point.

Dr. Zikmund-Fisher: That’s right. That woman might say, “I need to know whether or not I’m just a normal woman going through the normal risk of developing breast cancer over her lifetime, or somebody who actually really needs to pay attention to their risk of breast cancer, do screening more frequently, or talk to their doctor about prophylactic medications that can help prevent breast cancer.”

They wouldn’t know whether those would be appropriate or not.

Helen: Somebody would go online, put in some data and then get a number back. Is that good?

Dr. Zikmund-Fisher: I think that’s the question they’re going to ask. Let’s say this woman puts in all of her information and finds out that she has a 2% chance of developing breast cancer in the next five years. Is that good or bad? How do you know?

The number isn’t the point. What she needs is to know how that compares to the average woman’s risk. She needs to have a reference standard that enables that number to have some meaning. Without that reference standard, it’s just a number.

Helen: I’m looking at this chart. We’re going to have a link of this on the Health Literacy Out Loud web page so that other people can look at it too.

I want to talk to you about what we can do better. But before we get there, we’re on the third tier. Let’s go through different kinds of needs of information. Then we’ll go on to what people can do about it. You talked about the motivation to act or not act. What’s next?

Dr. Zikmund-Fisher: Next is decision making and situations where we have multiple options. Let’s say there are different treatments we need to choose between. Some of those treatments might have higher chances of one outcome and lower chances of another outcome. Maybe those are good things or bad things.

The point is that we face a lot of decisions that are tradeoffs in which I could choose this and have a better chance at having this outcome and a worse chance at having that outcome. Those kinds of tradeoffs require us to understand risk in a comparative way.

Helen: It’s like if you’re going through breast cancer surgery and decide whether you have this kind of surgery or that kind.

Dr. Zikmund-Fisher: That’s right. You can’t have both.

Helen: You can’t both, and you probably aren’t going to have neither. You have to choose and make those tradeoffs.

Dr. Zikmund-Fisher: If you’re a man diagnosed with prostate cancer, you can have surgery or radiation therapy, or you can do active surveillance and not do anything for a while. They each have risks and some benefits. You have to understand what those tradeoffs are.

Helen: That also deals with the individual and his or her values too.

Dr. Zikmund-Fisher:  Absolutely. You have to know your own values. I’m a guy. If I care about the impotence risks more than I care about the anxiety of knowing that cancer is in me, I might be tilted toward one approach versus another because I understand how my own person values interact with the tradeoffs that exist between my different choices.

Helen: Is that where decision aids come in?

Dr. Zikmund-Fisher: That is absolutely where decision aids come in. Sometimes we need that comparison to be on a qualitative level, like, “You’re more likely to have this happen and less likely to have that happen.”

Sometime we need quantitative information. I might need to know that this isn’t just a 10% risk, it’s a 50% risk, because that difference could be really important in my decision making.

Helen: Let’s go to the top needs, Brian.

Dr. Zikmund-Fisher: The situation where people need precise risk information the most are situations where we’re making decisions about reducing risk.

The example I used in the paper is a woman who has already had her diagnosis of breast cancer and already had surgery can do different therapies to try to reduce the risk of the cancer coming back.

It makes a big difference whether that therapy is going to reduce the risk by 1%, 10% or 50%. The magnitude of the benefit is the goal. We have to have detailed, incremental risk information to be able to make those choices.

Helen: What a spectrum there. Until you talked about that and gave all of those examples, I don’t think I really had appreciated that full range because I just hear people say “risk.” It seems like an easy four-letter word, but there’s really so much to it.

Brian, what are we going to do about it? Our listeners all somehow care about health literacy. Probably most of us are health communicators at some place, so we have that giving end of information and want to know what we can do. We’re probably all on the receiving end of such information too. So clue us in.

Dr. Zikmund-Fisher: There are a couple of things that I always suggest when I talk about risk. The first and probably the most important is to know why we’re communicating in the first place. I went through that list of needs because I believe that the formats we use to present risk information to people should be tailored to the purpose that this person has.

If I’m receiving information about my health risk so that I can decide whether I need to start an exercise plan so that I can live healthier, that’s more of that motivate-to-act place. I’m deciding, “Am I going to get motivated?”

That means I should make sure more than anything else that I give my audience a clear signal of being above risk, on the borderline, average or low because that clear signal will help them feel safe or at risk, and hence feel motivated to act or not act. Maybe that involves a number, or maybe not.

Helen: You’re the number guru and you’re saying, “Maybe not.” That’s very refreshing, Brian.

This clear signal inspires someone to take action, stop doing something, or change behaviors or lifestyles. What would be an example of a format that would work?

Dr. Zikmund-Fisher: There are many ways that we can accomplish that goal. In the online risk calculators, the key is making sure that the output is color coded or attached to a label that explicitly says, “This means that you are at borderline high risk,” or, “This means that you are at average risk.”

Those labels are what people are really going to focus on because that’s the easy to understand part of it.

Helen: Is it? Is even the word “average” really easy to understand?

Dr. Zikmund-Fisher: In the technical sense, not necessarily, but in the gist meaning sense, I think it is. We know that average is like other people. At that level, that’s the emotional meaning that people will take away from that. That may be good or bad for a particular message.

I might want you to act about something even if you’re an average person. If that’s the case, then telling you that you’re average might not actually be the most effective way to get you to take action. I do think that those kinds of labels are very easy for people to interpret and to use.

By the way, that’s a double-edged sword. There are times in which labels are really useful, and we’ve just talked about them, but I’ll give you another example in which labels might not be so useful.

I’ve done a little bit of research looking at communication of risk related to prenatal diagnosis of potential problems with the fetus like Down syndrome. They are problems where there might be some form of chromosomal abnormality.

These kinds of screening tests have been around for years. We can take a blood test and learn more about whether a particular woman’s pregnancy has a high or low likelihood of having a child with those types of problems.

If we give you a number that says there is a one in 1,000 chance that the child will  have a problem, that helps us recognize that the vast majority of women are not going to have a child with a problem, but maybe that one in 1,000 is actually above average for people your age.

Helen: You have to put it into context.

Dr. Zikmund-Fisher: That’s right. If I tell you it’s an above-average risk, you’re going to feel afraid and want to do something about it even though it’s really unlikely.

I’m not saying you should or should not do something. That’s a value judgment. That’s not my place to dictate what you do, but words are very powerful motivators. If I label something as high risk, you’re going to feel like you need to do something about it. You’re going to feel afraid.

Remembering that that’s a really rare event may not be so easy because the emotional power of those words can be overwhelming.

Helen: I am really feeling the power of that. As someone who writes about risks pretty often, that’s a lot that we have to deal with.

I’ve seen a number of decision aids. Often they have stories, personal narratives and anecdotes. They’ll say, “I did this and I’m so glad I did,” or, “I didn’t do this and I’m so glad I didn’t.” They’re just different sides of a choice. What do you think about those?

Dr. Zikmund-Fisher: Those are very powerful too. There are a lot of different types of stories. The ones you were just describing, such as, “I did this and this is what happened,” are very powerful influences on people’s decision making.

Helen: They also say, “I’m so glad I did,” or, “I wish I didn’t,” so they add that active piece.

Dr. Zikmund-Fisher: Absolutely. Those can influence our decisions for both good and bad reasons, but that doesn’t mean that stories can’t be informative if they’re not telling us exactly what somebody else did.

There are other types of stories that describe what something felt like. They describe the experience of going through the preparation of going through a colonoscopy or of having your hair fall out if you have chemotherapy as a cancer patient.

It doesn’t necessarily say that was a right or wrong choice, but it might help us better understand risk. You’ve got to remember that risk isn’t just a probability. Risk is a probability of something happening.

Helen: It’s a probability of something happening to you.

Dr. Zikmund-Fisher: That’s right. If I can’t imagine what it would be like to have it happen to me, then I’m not really understanding that risk. Helping us understand the lived experience is also part of understand risk.

Helen: Thank you. “Lived experience” are very useful words to have. You said that sometimes you really do need to know those numbers as you’re comparing things. I think that’s where many of us wonder, “How do we do this? Do we do a chart or a graph?” How are we going to explain numbers when we feel that numbers really need to be there?

Dr. Zikmund-Fisher: That’s a huge question. There’s no single answer that’s going to be right for every application. I’ve been doing work over the last 10 years with a number of colleagues, and other research groups around the world have been researching what is often referred to icon arrays or pictographs.

This is a particular type of visual display that represents risk by showing a matrix of 10-by-10 rows and columns of blocks or little people and coloring in some of them to represent the people who will have something happen to them and leaving the others ones some background color like gray to represent the people who were at risk but who did not actually have the thing happen to them.

Helen: Do you like those?

Dr. Zikmund-Fisher: The evidence is pretty clear that even though they’re a little unfamiliar, they work better than many other of the standard graphics like pie charts or bar charts at helping people understand risk. Risk isn’t like other numbers. It’s bounded between zero and 100. You can’t get 102% risk.

Helen: You can fit it in that matrix.

Dr. Zikmund-Fisher: That’s right. What you’re really trying to do when you talk about communicating risk is to communicate what we call the part-whole relationship. It’s the ratio of what proportions of people are affected as compared to the full population that might have had it happen to them.

Helen: I’ve seen those, and I do find them pretty helpful. Some will be a darker color or a lighter color. How would somebody go about doing this? You and I have talked about how you don’t like pie charts, but you can get tools for bar graphs and line graphs online. How would go about the icon array?

Dr. Zikmund-Fisher: I hope that these types of displays will someday be included as options in the standard spreadsheet software.

For the moment, we have been working here at the University of Michigan at developing a free online tool, which is currently available at www.Iconarray.com,where you can go and make your own icon array graphics. You can tailor them to the level of risk and the particular colors you want, etc.

Helen: Can anybody use it?

Dr. Zikmund-Fisher: Absolutely. It’s freely available.

Helen: Thank you. What a gift to us all.

Brian, I’m so impressed with how much you know, how much you do and how passionate you are about this. What gets you excited about this as you look ahead?

Dr. Zikmund-Fisher: What gets me excited is both history and future. The history is I have gone through my own medical experiences. I’m fully aware that this isn’t about being smart. Even smart, educated people who really care find it hard to deal with all of the numbers that they are overwhelmed with when making difficult health and medical decisions.

Helen: That’s goes beyond the everyday decisions.

Dr. Zikmund-Fisher: They’re the everyday ones like, “Should I take this headache medication?” or, “Am I comfortable with the particular kinds of medications that I’m taking?” all the way to the very complex, life-altering decisions of cancer treatment, weight-loss surgery or whatever.

Those are all decisions that many of us will have to face, either ourselves or as participants in family member’s decision making. Those processes are hard. I recognize that we have to do better about making it possible for people to use the information we have available to us at the moment that they need it.

What excites me is that we are seeing a greater interest in involving patients in healthcare and their own health management. That’s wonderful. Don’t get me wrong. I also want to make sure that when we do that we don’t abandon people by saying, “Here, it’s your problem. You decide.”

They’re not the experts. We have to help people know what information is relevant and know how to think about risk, how to make choices to guide them through decision-making processes, and how to structure the information we give them in a way that will make it as easy as possible for them to make the decisions that best fit with their own values and needs.

Helen: It’s really getting to the heart of the individual and touching people where they are, whether they are folks who are skilled in numbers and savvy readers or people just beginning this information. We’re all in it together.

Brian, thank you so much for doing all you do and championing the cause of really considering what we’re communicating about and how we go about doing it. Thank you so much for being a guest on Health Literacy Out Loud.

Dr. Zikmund-Fisher: Thank you. I’m glad to do this.

Helen: I learned so much from Dr. Brian Zikmund-Fisher, and I hope that you did too. But health literacy isn’t always easy. For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there, sign up for the free enewsletter, What’s New at Health Literacy Consulting.

NewHealth Literacy Out Loud podcasts come out every few months. Subscribe for free to hear them all. You can find us at iTunes, Stitcher Radio and the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

Did you like this podcast? Did you learn something new? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.


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