Helen Osborne: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 conversations with some really remarkable people.
Today, I’m talking with Dr. Brian Zikmund-Fisher, who is Associate Professor of Health Behavior and Health Education at the University of Michigan in Ann Arbor. He is also the Associate Director of the University of Michigan’s Center for Bioethics and Social Sciences in Medicine.
Trained in decision psychology and behavioral economics, Brian designs and evaluates novel communications to make health data more intuitively meaningful.
He also studies the effects of poor numeracy on the public’s use of health data and explores the power of narratives in health communications.
Brian developed and teaches graduate courses in health risk communication and designing memorable, or “sticky,” health messages.
I first met Brian years ago when he was speaking at a conference. I was so impressed that I interviewed him for a Health Literacy Out Loudpodcast. We talked about “Communicating Risk, Consider What Patients Need and Want to Know.”
More recently, I read an article that Brian and colleagues wrote, called “Graphics help patients distinguish between urgent and non-urgent deviations in laboratory test results.” I knew I wanted Brian to again be a guest on Health Literacy Out Loud. Welcome back.
Brian Zikmund-Fisher:Thanks. Thanks for having me.
Helen Osborne:This time you’re focusing on lab test results. Two starter questions, but they’re probably each big. Why is it important that the public understands their lab tests results? My follow-up question is, why is it so hard to do?
Brian Zikmund-Fisher:Let’s first start with the fact that we get a lot of lab tests done as patients in managing chronic diseases, like diabetes, managing cancer, cancer survivorship or cancer treatments.
The list goes on and on about the number of conditions that people are not just having lab tests done once to test whether they have the condition, but having tests done on an ongoing basis for monitoring or decision-making purposes.
The second big point is it used to be these tests got ordered by the doctor and then the results came back to the doctor, who either shared them with you or not.
Helen Osborne:Yes, that long wait.
Brian Zikmund-Fisher:Today, we have electronic portals, electronic record systems.
Brian Zikmund-Fisher:I can log on to the record system at my hospital and see all of the lab test results that I’ve gotten in the last few years.
Helen Osborne:What a shift.
Brian Zikmund-Fisher:They’re often released essentially immediately, so people are seeing these results without a doctor there to help interpret them.
Helen Osborne:That makes so much sense. We’re seeing our results. It’s just a bunch of numbers and data. It’s very technical.
This is your area of expertise. Why is it so hard for people to understand this? It’s the layperson I’m talking about.
Brian Zikmund-Fisher:We don’t do it every day. That’s the simple answer. A clinician sees the same tests multiple times a day and knows all of this contextual knowledge and where the action points are and how worried they should be about different types of numbers. Most patients have no experience.
On top of that, it’s numbers. It’s not always easy for people to deal with numbers and to do operations on numbers. That’s the numeracy idea that’s very analogous to health literacy.
You have people being given information in formats that are not always easy for them to understand, that they’re not familiar with, and yet they know they’re supposed to do something with them. That’s not a good combination.
Helen Osborne:Wow. Just as you’re telling me this, I’m coming up with so many stories.
In the beginning, when you were talking about lab test results, you were saying that sometimes we get that once to figure out something, and sometimes it’s ongoing. Do people have different amounts of ability to understand the data. Let’s say, if they’ve had diabetes for five years, versus someone who may or may not have cancer?
Brian Zikmund-Fisher:Sure. Familiarity through experience can help make this easier for people. If someone has been diagnosed with diabetes and has been seeing, for example, their hemoglobin A1C results, which is a measure of blood glucose control, or blood sugar control, regularly for years, they will learn, either through just comparing how their numbers are to how much they’ve been paying attention to their diabetes or through conversations with their clinicians, at least something about how to interpret those numbers.
Why should anybody have to wade through years of experience to get that information? Why can’t we, as communicators, help provide that context right from the start so that anybody looking at the same numbers would have the same understanding about what it means?
Helen Osborne:I see that too. Whether it’s something scary or something reassuring, you want to know that right away.
Numbers are for numbers’ sake, and the clinicians need to know that so they can prescribe or come up with treatment plans. For the patient or layperson getting this test data, what actions do they need to take as a result of understanding and using these numbers? What are the consequences of that?
Brian Zikmund-Fisher:Obviously, it depends upon what kinds of tests were being ordered. We’ll use the diabetes example. Sometimes this is a monitoring task. I, in conjunction with my healthcare team, am monitoring an outcome. Maybe it’s blood counts, hemoglobin A1C or a hormone level.
That status is important, both for me to understand as a patient so that I can help figure out whether or not my own behaviors, my diet, my exercise, my taking my medications regularly, etc., is having an impact. But also for both the clinician and the patient to use in deciding whether or not the current therapy is good enough, whether some changes need to be made, etc.
The other thing that I think is an important context to consider is that there are a lot of times people get put on, for example, medications that require you to have monitoring tests done. You’re not actually paying much attention to them. You just have to make sure something isn’t going wrong.
Let’s say the drug has known effects on your liver, so the doctor might order some liver function tests just to make sure that it isn’t harming your liver, whatever the medication is that you’re on. If you get a result back, you want to know, “Is my liver okay?”
Helen Osborne:Of course.
Brian Zikmund-Fisher:If you can’t figure that out, that’s going to evoke some anxiety in you that we don’t need to have.
I ought to be able to communicate that information to you in a way that helps you know whether you’re fine; maybe you’re not quite where you should be and maybe you ought to talk to your doctor; or that this is actually evidence of a significant problem that ought to evoke some urgent response, maybe a call your doctor right away kind of thing.
Helen Osborne:As you use that word, the “maybe it’s not quite fine,” it sounds like there’s a broad spectrum there. I had some complaint, I went to the doctor and she did some blood test that covered a lot of issues. I looked at my data. I’m okay at numbers, but not great. I could see that most of them fell within that normal range.
One of them didn’t. I had no way of knowing is this a bad problem. It fell a little bit outside of the normal. Are they going to call me right now, or is this a nothing issue and just a little bit on the outside?
Is that the kind of issue you’re talking about, like helping patients make sense of that data, when to panic, when to do something, when to say, “No big deal”?
Brian Zikmund-Fisher:I don’t think anybody wants patients to panic, but certainly we would like anybody who’s receiving these results, whether it be the patient themselves or a family member who’s helping them understand or manage their conditions, to know exactly as you were saying. Does this not require any action, does this require immediate action or does this require maybe follow-up but not urgency?
Helen Osborne:To help us really make sense of those numbers.
Tell us about your research. I’m just wowed by what you’re doing. I want all Health Literacy Out Loudlisteners and everybody to be hearing what you propose or are you looking at to make lab test results easier for everyone to understand.
Brian Zikmund-Fisher:Right now, in most systems, if you go log on to your hospital’s portal, what you get back, if you want to look at your test results, is a table. That table shows the name of the test, not usually in any easy-to-understand descriptor, just the name, your number or your result and a standard reference range. That’s it.
A few years ago, I published a paper that showed that many people have difficulty doing what you did, Helen, which is to look at your number and figure out whether or not it’s inside or outside of the standard range.
In particular, we showed that both lower health literacy and lower numeracy were associated with having greater problems doing that task.
That’s the core of the problem. We want to help people, especially those with lower literacy or numeracy, to be able to make sense of those data.
What we’ve done more recently is to run a series of studies. The first is the paper that you were referring to, that looked at visual displays of test results. These visual displays are basically an elementary school number line.
Helen Osborne:From left to right, just the horizontal line.
Helen Osborne:We’re trying to describe this for our podcast listeners, so left to right.
Brian Zikmund-Fisher:It’s a left-to-right line that has a marker that says, “Your result is here,” and shows what the number is. It shows that standard range visually so that you can see “Is my marker in the range or outside of the range?”
It also shows a range of plausibly relevant values so that you get a sense of how far outside of the range your number might be falling, whether it’s just a little bit outside the range as compared to all the numbers that are being shown, or it’s really far outside.
The visual itself gives people a really clear cue as to whether or not they should think of their value as being pretty close to normal or much more extreme, out of range.
Helen Osborne:Can I just ask you a question about that? Sometimes just being a little bit out of range is like “It’s fine.” Other times, a little bit out is like, “Yikes, pay attention to this.” How do you differentiate between those?
Brian Zikmund-Fisher:There are a couple different things that we have tested. One is what I was already mentioning, which is being very intentional about choosing how wide, essentially, the line is.
When the amount of space that we show outside of the standard range is really small, there’s an implied message there that you don’t have to go very far outside the range before this starts to become bad.
When you show a big, long part of the line that’s outside of the standard range, there’s an implication there that your value can be quite different from the standard range, and maybe it’s not quite so bad.
It’s in another paper that will just be released about the time this podcast comes out.
Helen Osborne:We’ll have links to that in your Health Literacy Out Loudweb page, so listeners can get it.
Brian Zikmund-Fisher:We tested a little extra thing that we added into the display. It was just a line, and it said, “Most doctors are not concerned until here.”
We called this a “harm anchor,” sort of like this is the reference point you should look at to decide whether or not this is a big deal or not. If you’re not yet to that line, then it’s probably not a big deal. If you’re past that line, it definitely is.
Helen Osborne:Wow. I could have used that on my lab test.
Brian Zikmund-Fisher:These are the kinds of things that can be done in visual displays that can make them more understandable.
We’ve also done some things, and that’s also in that first paper you mentioned, to use color coding or labels that say “borderline high” or “very high,” etc., as other methods to help people make more sense of their test results.
All of these things help. I think the takeaway message from our research thus far has been any visual display makes a big difference as compared to the current tables.
We still have to work out exactly what the best combination of features is going to be for a particular type of test or situation, but I think the evidence is pretty clear that using visual displays can make a difference in helping patients understand what their test result is and helping them not worry too much about those results, just like the one you were describing, Helen, that aren’t in the normal range but aren’t actually that big of a deal.
Helen Osborne:Wow. Thank you so much for making that so much clearer to all of us.
I’m reminded of a podcast I did a while ago about a doctor who uses seemingly simple visuals that she draws to talk with patients about very complex surgery. Hers was called “Best Case, Worst Case,” and where you fall on a line. I’ll have a link to that on the Health Literacy Out Loudweb page, too.
For what you’re doing, what that doctor was doing, it seems like the outcome is fairly intuitive and simple. For our listeners, what can we be doing in everyday practice to build on some of the lessons learned, when we’re communicating with patients directly?
Brian Zikmund-Fisher:The first thing I will say is that we have to think about helping patients get that contextual knowledge, that experience, what you were talking about earlier as what you learned by experience, and making sure that we try to communicate that to patients.
Patients, the first time they see a test, have no idea how low or how high that value could possibly go. Even just communicating something like that can make a big deal in helping people understand whether a given value is good or bad, or even, if you’re looking over time, whether a change is a big deal or not a big deal.
Helen Osborne:Even if you’re the one ordering a test, you might say, “This is when you’re going to see the results. This is what we’re looking for, and we’ll call you or you call us or we’ll send you a letter,” and put it into context that way?
Brian Zikmund-Fisher:Here’s an example that motivated much of our research: patients with type 2 diabetes who are getting their hemoglobin A1C tests to monitor their blood glucose control.
Hemoglobin A1C is reported as a percentage. Percentages, by definition, vary between zero and 100, but a hemoglobin A1C will never, ever be higher than maybe, in a really extreme case, the high teens. Fifteen is a really extremely high value.
Helen Osborne:What’s the bottom? Is it zero?
Brian Zikmund-Fisher:No. I don’t think anybody I’ve talked to says you can ever get below three, and most times even below four is really rare, especially for somebody diagnosed with diabetes. Most of the action is happening between maybe four and 10, and movement of a half a percent is a big deal.
That’s not necessarily intuitive to people. It’s not even true for other tests. There are other tests, like hematocrit, which is a test run as a standard blood count, which is also a percentage, but hematocrit can vary between 30 and 60. I’m not exactly sure what the lab would say, but it’s much more than hemoglobin A1C will.
A movement of a half a percent for a hematocrit is not nearly as big of a deal as a movement of a half of a percentage point is for hemoglobin A1C.
Helen Osborne:Wow. Now I’m thinking about all the folks and all we know about health numeracy and how hard that is for people to understand. You’re talking about a convention of percent, a different symbol, a different range. Wow, that’s complex.
Brian Zikmund-Fisher:Which is why having the visual display helps. If the visual display only shows you between 4% and 9% or 10%, then you don’t even think about other values. It’s clear that this is the space that this value can move, and you can see where you fall in that space.
Helen Osborne:Just a few other takeaways for people doing this work. Before our whole electronic health system is changed, which it might be eons from now . . .
Brian Zikmund-Fisher:Hope not.
Helen Osborne:What else can we be doing today or tomorrow?
Brian Zikmund-Fisher:I do think that if you want to try and draw out a simple little line graph for patients, it doesn’t take that long. The important part is figuring out what’s the range of values that somebody wants to show.
The other thing I would say is be clear about what it is that the patient wants. If a test is being done for just checking up on your liver, to use that example, we better make sure that the patient knows this is okay but that is not okay, or something we should keep an eye on, etc.
There are a lot of different ways to do that. You can tell them that directly, if you write something to them. You can give them these thresholds that say, “You have to get above this before I’m going to start to worry.”
Making sure that there’s a clear takeaway message about the test result is, I think, another thing that we can do right now. We need to be conscious of any time we’re giving patients unfamiliar data.
Helen Osborne:Thank you. Thank you for all that you are doing there. Is there a way that people can see what you’re talking about? Yes, they should go to your articles. Is there any other way they can get a sense of what this might look like so they can try to do something in their own practice?
Brian Zikmund-Fisher:We have a demonstration site, and I want to be really clear about this. The website is www.MyLabResults.org. It is not ready for patient use because it is not medically vetted, and I would not claim that the range of values that we’re showing or the thresholds that we’re using in our demonstration graphics are appropriate and reflect medical advice.
If you would like to see what some of the kinds of graphics that we’ve been developing might look like as ideas for helping you to think about what ways you might want to try and develop visuals for other contexts, people can go to that site and take a look.
Helen Osborne:I think that would be really helpful because that would give a visual context, a cue about all the ways that you’re talking about to present unfamiliar information, whether it’s by doing it in a line, using a few simple words or putting it into context. I think that might be very helpful.
Brian, thank you on an ongoing basis for helping to make all this really complicated health lab data and all kinds of information that much more clear to me, hopefully to the listeners of Health Literacy Out Loud, and to patients and their caregivers everywhere. Thank you for again being a guest on Health Literacy Out Loud.
Brian Zikmund-Fisher:You’re welcome.
Helen Osborne:As we just heard from Brian Zikmund-Fisher, it’s important to communicate number-based information like lab test results clearly, too. But it’s not always easy to do.
For help clearly communicating your health message, please visit my Heath Literacy Consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.
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Until next time, I’m Helen Osborne.