Making Sense of Numbers - Health Numeracy - Ann Glusker - 8/15/2017

Author: National Network of Libraries of Medicine [NNLM]

OK, so I've started the recording. Great! Well, Hi, everyone. My name is Ann Glusker, I am a research and data coordinator at the national network of libraries of medicine, pacific northwest region, and this is making sense of numbers, understanding risks and benefits, communicating numerical health information. I'll be presenting this class but the class was created by the Michelle Burda, who is the education and health literacy coordinator in the mid Atlantic region. For those of you that aren't familiar with what the NNLM is, We're the outreach arm of the national library of medicine. There are eight regional offices around the country.

So I wanted to let you know the class is being recorded. We do have closed captioning, so, if you're interested in that, you can see in the chat box the links. We will provide at the end of the web far and getting continuing education credits and I want to introduce my two colleagues helping today, Maddie is our production engineer extraordinaire. Hello. Thank you, Maddie. And then my colleague Annie who is another research and data coordinator is going to be helping with chat at the end, so sort of feeding me questions. We will hold questions until the end. There will be a question slide, but I do want to let people know that if I haven't gotten to your question today, I really want to keep in dialogue with these things and happy to engage on e-mail.

With that just a little bit about me. I have a past as an epidemiologist in the public health department and I used to answer data requests from the public, so I saw a lot of issues with people working on understanding and using data that didn't necessarily have the numerical skills to be on top of it. So I sort of became fascinated in those connections early in my career. I switched to librarianship and most recently worked at the Seattle public library where I got interested in formally.

So you may hear me giving some public library examples later and hopefully we have some public librarians here. So starting with this comic, my first comment is I feel like the wonder woman fib should have a big L, because that's the librarian figure. She's going to help her friend Mary hose just been given hypertension medication that she believes gives her a 50% chance of having a stroke, and she's just trying to figure out why on Earth her physician would give her a medication likely to make her sick.

Making Sense of Numbers - Health Numeracy - Ann Glusker - 8/15/2017

We'll talk about how communication can improve so people don't lose sleep over their imminent stroke. So what we're going to try to do in this hour and a half or so that we're spending together is to talk about risk communication related to health numeracyand why it's so important in managing one's own health. We're not going to do statistics 101 in this class. We're just going to raise awareness about how important it is for people to understand the meaning of numbers.

If you don't understand what the numbers mean related to your health, you're not really making informed decisions, and I think we can all agree that making informed decisions is really a central aspect to self-care. So hopefully you'll get information in this workshop that you can use with colleagues, patrons, students, health workers whether in a professional or your personal contact, family and friends. So now I'm going to give the ball to Maddie, and we'll have a series of three polls. Take it away, Maddie.

All right. So you should see in the chat pox the poll, and we'd love it if you would select the answer you think can correct for this question. By the way, whenever you see AGon a slide, it means I added a slide to Michelle's slide deck, but you won't see too many of those. All right. Hopefully you can see the results.

So I'm seeing 4% said that 15% of people might have this trouble, and then we're kind of evenly split between 33 and 45%, the actual answer is 33%. But I think you could also say that maybe 45% of people maybe have either large challenges or boarder line challenges, and with today's health care becoming so complex, the self-management can be quite challenging, if you have numericalchallenges. So let's move on to the next poll, please. How are we doing, Maddie? 75% of people have responded so far. I'll wait just a little bit longer. Okay.

So people have 20 for seconds to finish up and submit their answers. Okay. So for this question the correct answer is 85% which is really kind of a shocking number when you think about it. So basically there's something wrong with the way we're trying to help people give medications to their kids, but it means that it's such a wide-spread issue. Just so you know the question was the delivery mechanism. So of people are trying to get the liquid medications in cups, they are very likely to make dosing errors, and 68% of those dosing errors were overdoses, so this slide is meant to kind of give you, just encapsulate for you why this is such an important issue and why hopefully it's worth your time to spend another hour with me.

And let's move on to the next poll, Maddie. All right. Okay.

Thank you for bearing with me with this question because it was kind of cheating. I knew you would all know it was all of the above are but this is kind of a way of saying to you that low numeracy levels really do have an impact on the health care system, the E.R. Visits, lower levels of screening and lower likelihood of treatment. So again it sort of shows the importance of kind of delving into these issues. Okay, Maddie. I will take it back.

All right. Let's close that up. Okay. It says you are now the presenter. Yay. Okay. So let's get into some of the content here. Rita Rudd, she's a respected expert in the health literacy studies and she's giving us three really good starting suggestions here, and I'll come back to these in the course of the webinar.

But she's saying sort of encouraging health professionals to actually do the math for the reader or the patient, to provide numbers along with words and consistently use the same denominators in fractions and we're going to see that over and over again. She wrote an article called numbers get in the way. We have the link at the end of the power point, and so she's really a great resource for us all. I also want to make two points that aren't on the slide. One is that health literacy and health numeracy are very different things. So you cannot, and I mean scientifically they are very different things and they express differently, so you cannot assume that if you have a person that is literate that they are also numericand vice Versa. Another thing is you can't as we all or many husband know just by looking at someone you can't assume a literacy level and therefore you can't assume a numeracy level.

There's another name you're going to hear often in this webinar, Brian fisher on whom I have a huge intellectual crush. He told a story about a Google employee and the health care provider just assumed, works for Google, must be fine with numbers and completely was not. So, you know, beware. So now we're going to move on to crunching some numbers. This slide freaked me out a little bit when I first saw it. The way to ham it is to draw a line down the middle. The left column is talking about sort of -- what do I want to say? The composing percentages so you can see how percentages turn into fractions, and then on the right side of the slide, you'll see how fractions can be turned into percentages, but the fact that many of us looking at this slide feel completely daunted and it's sort of just taken aback and it takes a while to sort through it is an indicator that even more anybody around these things can be challenging.

So Michelle writes in her notes that this slide is just meant to be a refresher and she wants us all to be kind of familiar with what the term numeracy means which is the ability to understand information presented in mathematical terms or the ability to understand numbers. I think that this slide really goes way beyond just understanding numbers. But it does kind of give you the sense that you're needing to think about addition, subtraction, division and with all mathematics. We need to know how individuals need numbers to be presented. Some people do not understand percentages.

We have to keep that in mind. Another thing to keep in mind is how often our bodily functions are suppressed in numbers. So here's a list. Our blood pressure, white and red blood cell counts, body weight, calories that are expended in exercise and consumed in food, disease risks, risks of side-effects, all of those are expressed in numerical values.

So now moving on to some definitions, and I'm going to talk about one extremely important concept which is the difference between absolute and relative risk. Hopefully I will get this across to you, but, if not, let M know because I want to make sure if there's one thing you come away with, that you kind of get what that difference is. So just looking at the slide itself, the risk, the chance that something will happen that's good or bad, let's say that's the risk of getting a speeding ticket, hence the picture of the police person talking to the people in the car. So the risk is, if I speed,ly get a ticket or not? The outcome is, darn, I got a ticket. What was the chance that I was going to get the ticket. 20% or two in ten people or one in five people, I should say drivers, will get a ticket this year. Would you have sped if you knew that that was your risk? I also want to know that when I gave you that number, I gave you a time span. So that can also be an important aspect of numeracy is understanding sort of the caveats around the number that's bean given.

One point to make about statistics is that they are talking about trends for large numbers of people. They don't predict what's going to happen to an individual person. That is a very different thing. It's #EU% sure that you will not have a reaction to this drug. If you're one of the two people out of 100 that has the reaction, you have to sort of do some thinking to yourself to accept the fact that 98% is not 100%. Let's talk a little bit about expressing risk.

Risk is usually expressed as a fraction, so the numerator would be the people that experience the outcome and the denominator is the people with the potential for the outcome. When I was learning epidemiology is people forgot to have only women in the denominate her pregnancy rates. So you don't really want to have men in the denominator because they are not at risk for pregnancy. If you want a pregnancy rate, it's the number of people that experience the outcome into the enumerator, in this case women who became pregnant, and the denominator is women, people with the potential for that outcome. Now moving on to absolute versus relative risk. These have huge places in expressing health care information. So absolute risk is your risk of developing a condition in a time period given your starting point meaning your age, your sex, other medically important factors.

Relative risk is comparing two groups related to each other, one who is exposed to a risk and the other who is not exposed to a risk. So let's say that there's a new disease coming around. It's called disease X.

It's so new they haven't even named it yet. But we've done enough research to say that the relative risk for smokers is 50%. So people who are not supposed or non-smokers, people who are exposed are smokers, there's a 50% relative risk if you are a smoker, 50% more likely to get disease X. Now let's look at absolute risk. Four in 100 non-smokers will get disease X. Okay. So 4% or four out of 100.

A relative risk of 50% is 50% of four. So 50% of four is two. That means six in 100 smokers will get disease X. So you can see that if you're sitting in a doctor's office and the doctor says your relative risk for getting disease Xsince you are a smoker is 50%. You might have the same reaction as Mary back there with her hypertension medication like I'm 50% for sure going to get disease X. Whereas, if the physician says, if you didn't smoke, you'd have a 4% chance of getting disease X. If you did smoke, you'd have a 6% chance.

You might feel differently about it. Hopefully this is clear. It's a little odd doing it on-line and I can't see your faces and tell if it's making sense. I'm going to keep my fingers crossed and talk more about it at the tend. It's a very important thing being taught to health care providers. I think this is the best way to remember it, why you should not be using relative risk. Imagine you've gotten a coupon for a store, it's a 50% off coupon but they don't tell you what it applies to.

Does it aapply to a diamond necklace or a pack of gum. Same thing with relative risk in health care. I will stop beating that one over the head and let's move on to the next slide which deals with visualizations. It's kind of a big deal. The visualization on the left, you can see that it's giving you the 75 out of 100 concept.

This will work for many people. On the right is another way of showing 75%. When I first looked at this right hand pie, I thought to myself, it's missing a very, very important thing which is a label.

So for people who are not great with percentages, it would be quite easy actually to see that upper left hand piece of the pie that's super dark. That really could look like the good results. I like the dark are blue better. I think it would be better to label this, but you get the idea. Now sort of state of the art now is this. So let me kind of deconstruct this for you and we'll see this later on some info graphics and people are really starting to use this quite exception I feel. It was created by the aforesaid Brian fisher of whom I have the intellectual crush.

Quite honestly this link I could not get that to work yesterday but it will get you there and just search. But what it's doing is it's giving a very, very visual way of understanding what 100 people looks like and then it's showing what 75 out of that looks like. The right-hand one is another way of doing it, if you feel that out of ten is a little easier to understand because the left-hand one starts to blur into like a lot of people. But if you want to give this a try after the webinar, I highly recommend it. It takes about 30 seconds to create one of these. It just has such a powerful impact.

Unfortunately, I left the public library before I could use it with patrons but I could definitely see this as an avenue of using this. Moving on to this slide there's one that's tailored to clinicians but it's open so any of us could use that. If you wanted to show two treatment risks side by side, it could be very helpful for that. Again, you could just do it on your computer in just a few seconds. So let me say a little bit more with Brian fisher and his shop. This was created by them at the University of Michigan.

They've done a lot of work on visual display on information for people to make good health decisions. So if you're kind of intrigued by this after the webinar, you might want to take a look at the site at the center for bioethics and social sciences in medicine. But if you just do university of Michigan, you probably should get to the site. They are also, if you're interested have something called the subjective numeracy scale and that's something that can be used to assess numeracy. Although I kind of feel like assessing numeracy should kind of be left to the professionals, but up to you. But the questions are so so interesting.

It makes you realize that people with numeracy issues go through life with a wide range of challenges. So to assess people's numeracy, you might ask questions like how good are you at calculating a tip? When reading a newspaper how helpful do you find the tables and graphs. Whether you hear a weather forecast do you prefer the predictions to have percentages or only with words and quite a few other suggestions. Like I said, if you're interested go take a look at their site in that scale and I'd love to talk to you about it. So here we are. We're in a clinical situation. Mr.Jones, he has diabetes.

He's trying to decide should I take medication or should he try to manages of condition with diet? Just think to yourself which option do you think most people would choose seeing these numbers? And actually I'm reading that from the script. I'm not sure I'd say most people would use it. Certainly the pull, the tug, of the number three is very strong rather than doing the math. This is a really good example of where we should be doing the math for the reader or patient because we're comparing apples to apples.

We're not comparing oranges to oranges. I think that's pretty clear. Another option is to compare percentages. In this case I might shy away from that though because point 3% is kind of hard it understand.

You get into the situation where are you with someone comfortable with percentages. It's sort of a case by case situation. Another thing to think about is how the information is framed. You've all heard the quote there's lies and damn lies and statistics. This is that kind of issue where you're presenting information in a way that frames it for the person hearing it. So when you're talking to someone about sort of their chances or their risk and you use death as the indicator, that's a very high stakes risk.

2 out of 1,000 to many of us feels like not a big risk, but to someone it may be big especially if they knew someone who died of colon cancer. It's easier to hear 99 won't die but, either way, you just need to be aware of the influence of how you present this is really going to effect the objectivity of how the information is received. So, for example, given what I have just said, how much you present this information. 2% of people who undergo this procedure will develop a serious blood infection. So high stakes, right.

Not death but high stakes. You might frame it just the way that we did in the previous example. So you might say 2% will develop an infection but 98% will not develop a blood infection. So there's just the thinking through what effect the information is going to have on the other person.

I sort of tried to do a little bit of research on when you should actually give numbers to people versus saying a small chance. I didn't really find any clear guidance on when one or the other is better. But sometimes a small chance will work better. Sometimes saying two out of 100 will work better. But I think in this age of shared decision making where providers and patients are supposed to be working together to create outcomes, I think the idea is that patients have more information rather than less. So not what the provider thinks is small but letting the patient decide hopefully with support for their numeracy. And remembering in this case that Icon array or other pictograph, you might want to consider having those up and running so you can use them at a moment's notice.

But do remember that there are many types of pictographs. They are very sort of culturally influenced so that's something to think about. So moving on to this pyramid of benefits. I found this a challenging thing to think about until I up packed it. The word surrogate kind of threw me a little bit. What's meant by it is these are things that you don't really feel directly. I think it's outcomes for which it's easy to have denial, if you want to put it that way.

If you have a blood test that doesn't come out the way that you hoped, you're not really feeling it in your body. Moving up on the scale, symptoms of disease, you are feeling those in your body, and then moving further up, death, sort of the ultimate thing that you would be feeling. So what this chart is trying to do is indicate that you're going to care a lot more about the numbers the closer they come to death basically. I can't think of a nicer way of saying that. It's listed as a pyramid of benefit but it's hard for me not to say the pyramid of death or whatever. But anyway.

So you would be wanting -- as the issues became more higher stakes as you move up the pyramid, you would be sure you were communicating very clearly and you would want to be sure that the person that you were communicating to really understood what you were communicating. I'll just throw in a little mention right now of something called teach back, if you've heard of that. Teach back is a technique that's been increasingly used where the provider or the information provider is talking to the person receiving the information and there's sort of like information information, blah blah blah and saying to that people please tell me how you understand the information I gave you or could you please give me a sense of how you would express this to your husband of you get home just so I'm sure I didn't leave anything out, that kind of thing. And when the person reflects back to you, you may find that there was significant differences in understanding to what you expected. So let's move on from that.

I'm seeing a lot of great things in the chat box. I'll try to get to some of these things at the end. I will respond to people after the webinar, if possible. Moving back to the slide, how could both of these things be true? They are worded exactly the same.

Obviously something is missing and I think we've come far enough in our discussion that you can think of a lot of things missing that might make both of these comments true. So here we go. First of all, the time frame is different. So the 13 out of 100 American women refers to people in their lifetime, so you might say age 15 and up. Whereas the three out of 100 women is age 50 and up, and it's only a window of ten years. So these are almost so different numbers that you shouldn't really be expressing them in the same conversation almost, but for certain people they might be complimentary pieces of information.

I think it's just that we want to make clear that you should never really be presenting either number without the context of the time frame or the group to which the number refers, in this case women over age 50. So again this is making sure you're clear about your message, and I'm hoping at this point you kind of have a sense that you might want to change these numbers to 125 women out of 1,000 will develop breast cancer and about 30 in 1,000 or one fourth of that number will die from breast cancer. Actually you don't really need to say die from breast cancer at some point in their lives. I also want to note in this example, the only thing specified is the women are American. It doesn't get into factors such as education, income or race ethnicity, occupation, region, all things that might effect breast cancer risk, and that's just kind of a question when you're communicating with people how detailed do you want to get. If someone is in a group that might sort of put them at a higher risk, you sort of want to try to get into that information, if you can. So more on risk. So this is sort of talking about the kind of risk questions people have when they learn that they have a condition or a disease or are facing some kind of health challenge.

If it's something that's quite serious that indicates survival versus non-survival, of course people want to know their chances. The one thing that is helpful with people is to put the risk in perspective. So what would your risk be of dying of a heart attack in the coming ten year period compared to dying from other causes in the ten year period if you're 70 or 80 years old. It might seem like the risk of dying of a heart attack is high, but when you realize that, you know, at a certain age there's quite a risk of dying of other causes too.

Age and sex are the most important predictors X comparing risk, so being specific about those can be helpful. Another thing is to come back to that visualizations to help buttressthe numbers. All of this is moving into an area of medicine that is not always comfortable to providers called -- it's being called risk factor based medicine and it's tied in with the movement now called share decision making. So if the decision-making process is something that's where the provider and the patient are working together for an understanding and a decision, this risk factor discussion is central and crucial and has to be done well. So here's an example of a visualization.

And I think it has a lot of good information in it. I think if I were sitting with a provider, although I'm numerically quite comfortable, if it was someone a little less comfortable they would do a little more work. If you look in the upper left, it says the earlier a diagnosis the better the chances of survival. And then the stages are not explained in terms of time. They are explained in terms of location. To me that's kind of a problem. I think that the assumes we understand that the timing of the diagnosis relates to the location of the diagnosis but I don't think they should be assuming that, quite honestly.

So you can see there's localized confined to the organ of origin, distance spread to other parts of the body. I think that if they are using that as they are charting, they should explain how it relates to an earlier diagnosis. I think the wording should be the more localized a diagnosis. So that's just one thing to be thinking about. Another interesting thing is I went to print this out yesterday and they had taken out the donuts. I have seen things that show the donuts are very good ways to do the visualization. I wonder what the decision process was about taking those away.

So here's another chart that's an info graphic. I think of as a collection of related visualizations with context added. They gave you the number of adults that had pre diabetes and they say one out of three, they don't say one third, they don't say 33%, they say one out of three and they have three people and the three people vary in color and presumably gender, if a skirt indicates a woman. In Seattle it could be a guy wearing a kilt. I just think they've done a good job there. Then in the next panel down they have nine out of ten people, not 90%.

They have nine out of ten and they have the pictogram. The next little section is not numerical. You can be really creative with these things. So moving along, the question in this slide is what if we want to target a particular audience, so, for example, college students. This infographic is giving us a pictograph, one in six adults binge drinks and they are showing us on the calendar, four times a month and how many drinks they binge on. If you did want to concentrate on one group, where might you go? Well, if you are in the world of NNLM.

Medlineplus.GOV is a great overall, free comprehensive resource. It's out there on the internet, has a medical dictionary, has videos, things in many languages, interactive tutorials. There's a section on how to write easy to read materials that's quite good and does includes numeracy. This link on the slide isn't exactly right but if you Google it, you can find it. Just want to say it's free.

One thing that's really great about it is how authoritative it is. So the link you find there has been vetted by a librarian, who better to vet information sources. Has information on 50 diseases and conditions from over 1,000 organizations. It has over 35,000 links.

So, as I say, quite comprehensive. It's updated daily. No advertising, which is quite significant. When I was at the public library, I often had the questions from patrons they wanted to see things on webMD. I would have the discussion, not completely cool with webMDbecause of the advertising and how that might shift viewpoints. No advertising on Medlineplus.GOV. Another great thing about it from the public library point of view, anybody can look at it.

They don't have to be have a library card. They don't have to have a computer. It's mobile optimized.

It looks great on mobile devices. You don't have to formulate some fancy surge. You just stick in college drinking and notice there's -- we've starred the first item but you're going to get quite a few results.

So you can see on the left-hand side the number of results you get and what kind. There is something college drinking prevention.GOV. But there's two others that Michelle who created the course mentioned in her notes that I can talk to you about more. If you're specifically interested, let me know. So here's that collegedrinkingprevention.GOV.

And a nice little infographic here. So just want to sort of make sure that you know about that as a source of good, reliable information with numericALcontent. But getting back to risk. One big question is is it worth the risk to do a particular intervention. What are the benefits versus what is the down side? And this is kind of getting into much more of a value-driven discussion. It may not be quantifiable in a numerical way.

At the very end a stuck in a resource slide of me own and I mentioned again, whose name have I mentioned more than any other in this webinar, Brian fisher, but he created Icon array. Who is going to understand risk better than someone who created Icon array. He understands risk and how to think about it.

He was faced with a life-threatening injury -- I'm sorry not life injury, condition, that he could expect about ten years of life. He had to decide -- and his wife was pregnant with their first child. So he had to decide do I want a very risky procedure which involved a stem cell transplant or do I want to take this ten years of life that I'm being offered? There's not really any numbers that are going to help you make a decision like that.

So this is a presentation on health numeracy but that third point has helped people visualize what you want them to do. I think now it's more of a conversation about here's all the numbers, here are the potential outcomes, none of which may apply to you personally, now which direction do we want to go? But that's kind of a high stakes example. What we want to come back to is Mary trying to decide about her blood pressure medication.

If you read the inserts you pretty much don't want to take the medication because it's scary. How can we get people to feel more comfortable with the numbers and how they might apply to them personally. So here's a visualization that's applying numbers to a personal situation. It's looking at one person's potential for complications, not keeping their A1Clevels under control. A1Clevels is a test for blood sugar for people that are diabetic. So if you have your A1Clevel under control, you're at much less risk of complications. So this is the kind of thing that can be motivating for people, looking at it over time.

Looking at a few things, I can't resist saying it sort of bugged me a little bit that the stars, which quite honestly can be motivating to people, you'd be surprised. There's something engrained about stars, I got a star, but those are Icons and the bars at the bottom are outlined in red and so the risk and reward are being presented in two different ways. I'd be more comfortable if they were represented consistently. Another thing I would say is I'm a little concerned. My blue is blue-green color blind so I'm a little concerned that the bars are blue and green. These are minor quibbles. If you were a patient and saw how that blue line was shrinking towards the left and your risk of complication was decreasing, that would be a great thing.

So again when a person is making that decision, they are trying to think about how to reduce the negative outcome, how big the reduction in harm will be and will it apply to me personally. So, for example, if you have osteoarthritis and it's going to progress to the point you won't be able to walk, maybe you're willing to affect side-effects to be mobile again. If you can't drive because you have cataracts, you might be willing to take a surgical risk to have the benefit of driving again. If you're young and you're likely to have a high success for knee replacement operation, you may be willing to take that risk. So, for example, one thing you can do in Medline Plus is look for disease specific risks. If someone was thinking about quitting smoking, they might think what outcome am I concerned about? Probably lung cancer. How big might be the reduction if I quit smoking? Quite big. And then how might these risks apply to me? That would depend on the person's age, how many cigarettes they smoke a day, how long they've been smoking but those are the kinds of things you might ask.

This is how you might want to parse out a health condition with someone looking to evaluate their own risk. This slide so me is a little more connected to what we were talking about before, but since it's there, let's just address. How might you change that 480,000 people into a percent of the U.S. Population. How much would this apply to me? You would need to know the under lying population and you might want to question whether you would include children or only people over age 15 or whatever. But again when you're looking about the effects on yourself, specifically you may be thinking about translating numbers like this. So now moving on to a really important point which is that we don't always know the answers, so a recommendation from the CDC is to always state clearly what we know and what we don't know about a health topic. Acknowledging the uncertainty makes our information more trustworthy.

So Zika is a great case in point. So here's very busy slide with some information about what we know and what we don't know. Lots and lots and lots of information here. A little bit hard to parse. So this isn't a numeracy example but it is a presentation of information example. When we move to this slide, you can see that it's a little bit easier to kind of sort of sort through the information. But I would not give someone information about what we know and don't know without giving some suggestions for reducing risk. And I also just want to point out that it's very challenging at the early stages of any disease.

So if you sort of read -- I went to an epidemiology conference recently. If you compare the discussion now about Zika, very, very similar kinds of discussions are happening at the beginning of the H.I.V.-AIDS crisis. People need the information desperately, the stakes are huge and the information just isn't out there. There hasn't been enough years of information or enough research to really know the answers, so it's a very vulnerable stage. It is what it is but it's just kind of interesting to note those comparisons. And then this slide was a little challenging for me.

I'm not completely sure what Michelle wanted to do with it. So that's my own fault. I should have asked her. Let's work through some of this. I think the idea is if we want evidence about a certain thing, for example, if I'm a woman that's of pregnancy age and I have to travel to Florida for a conference, where do I want to find information? I want to be looking for information in all these kinds of ways, survival statistics, whether I feel that the numbers make sense to me or has there been any research done, even preliminary findings or case studies, what kind of research might apply, for example, for Zika you might be looking for animal research.

If there's no human research yet, do I trust the research. If it's a for-profit organization like pharma is kind of notorious of funding research along the lines of the products that it's selling, how much do you trust that kind of research and who is behind the numbers. I think all of these questions are gaining importance as patients do more and more of their own research on their conditions and conditions of their loved one. Clinicaltrials.GOV is an example -- if you're familiar with that database.

We can talk more about that if people are interested. It used to be just a repository of clinical research and it actually has become -- they've had to re-do the database so it's more useable for patients. They found out patients were using it heavily to find out what kind of studies might be helping them with their condition, that kind of thing. It's really kind of a new age in terms of consumers being interested in and actually affecting the direction of medical research. I think one issue that we're not going to talk about but I think encapsulates everything on this slide is the percentages of parents vaccinating their children.

So we get the question of survival statistics, we get the question of believe ability of the numbers, we get the question of what kind of research studies were done and how influential were they, have they been retracted, what kind of research was done, hose behind the numbers, and I would add another bullet point to this, what affect does the change in numbers based on the research finding have on the population. I do kind of encourage you, if you're interested in this. This was a really interesting NPRpiece called patients increasingly influence the direction of medical research.

And it had some information about some parents that actually begged a university for bench space to do research on the genetic issues faced by their own child, and they actually made some break-throughs. I don't think that's for everyone but it was a fascinating story but one really challenging aspect of the story was the concern among some researchers that the patients were going to be co-opted by the researchers. Anyway, it's a brave new world, research and patient involvement. Amy, could you send me the name or link, I can't right now. I'm adding it to my list of things that I'll send up my e-mail after the webinar. So we're back to Mary. Mary is still really worried about her 50% chance of getting a stroke from her medication that her doctor gave her.

So when I looked at this slide, there is one word that is missing, and the word is increased. So she should have heard hopefully that she had a 50% increased chance of a stroke, if she took the medicine, and noticed that is relative risk, not the recommended absolute risk, and she's interpreting this as half of the people who take this drug will have a stroke. So what they really didn't get was that the increased risk -- and this is a good slide again coming back to that absolute versus relative risk. The absolute risk is three out of 1,000. The absolute risk without the medication is two out of 1,000. That relative risk that looks so high and scary takes you from two out of 1,000 to three out of 1,000. So hopefully someone, maybe super librarian will put Mary's slide at rest.

So just a little piece here about evaluating the information that we see related to health and numeracy. I'm going to skip through these a little bit quickly. So hopefully if you want more conversation about it, feel free to be in touch with me. You'll get the link to the slides afterwards. But just helping people keep their eyes open and know how to evaluate the information they see is such an important thing.

So the five necessary steps and those of us who are medical librarians have probably heard of these. The first one, whose responsible for the content, where did it come from? Don't believe everything you read. I actually some time ago for a paper that I wrote tracked a comment that I saw in the "New York Times" about the percentage of cesarians and what kind of facility they were done in. It was mentioned in the "New York Times." I tracked it back to the study that that quote came from, and it was kind of misquoted a little bit, and that study that I tracked it back to was actually misquoting other study. It was kind of a fascinating whisper down the lane, so the more you dig, the more you can find.

Second point who says so. So who are the authorities, who are the authors. When you go to a website are you really able to see the credentials of the person, can you look the person up in another place and make sure that you feel that they are someone who can and should be writing about this topic number three is the information fact or opinion. I didn't point we should insert an entire webinar of four hours on fake news, but we are not going to do that right now. But this is where a lot of that stuff comes in. I do want to give you one example from my time at the health department which was king county wanted to, when I was working there, have a neurofibromatosis day. It wanted me to give the information about neurofibromatosis which is a quite rare condition.

I really was not able to find any good government based or authoritative sources on this condition. The only thing I could find was the state chapter of the neurofibromatosis society. So should I use that information or not? Well, they know more about it than pretty much anybody else because they focus on that information, and so as long as you use it with a caveat that it's not a government source, that it's a patient advocacy source, fine. You sort of do what you can at the time. I think we would all agree with that. Fourth, look for the timeliness.

So be sure to see that they are noting the date it was developed, lifetime reviewed or revised. If the date isn't there, proceed with caution. And then fifth, the evidence. Is the information supported with resources, reference studies? Cross-checking data, the use two rule, hopefully you can find the same data cited in two different equally reliable sources so that you can sort of trust that -- and again they have to be reliable sources because we all know how data can take on a life of their own. A retracted study, it's much harder to retract than to put out good information. But again if you're finding the information in more than one reliable source, that's a great thing. And if you want to delve into this more, there's a great tutorial from the national library of medicine that you can take a look at.

So now whoo hoo, AG, here's two slides that I've added in case they are helpful to you. These come from a conference that I just did, and what I did for this poster was I did a lot of reading in that literature on health numeracy to find what was recommended for health providers as best practices for working with patients, and then I said, okay, those are cool, that's in the left column. In the right column, what should librarians be doing based on what they are telling providers to do. So the next two slides I'm just going to go through these items. One is the providers are being asked to set up systems to assist consumers, so the idea being, you know, we don't have a lot of time, let's get the system so we can be more efficient.

Librarians wherever possible should give patience the time. Moving alock, assessing patient numeracy. Providers are expected to assess patient numeracy. I don't think librarians should be in a position of assessing numeracy but we should remember never to assume a numeracy level, and it can be a delicate conversation but to have it at the back of your mind is a great thing.

That providers are being asked to use coaching and teach back techniques, librarians can do the same. Do you feel like you understand it? How would you explain it back to me? Providers are expected to address patients in their own care. For librarians, we need to accept that patrons may not be able to handle the numeracy requirements of their situation. So to sort of keep banging about someone, well, it's this percentage versus this percentage, right, get it? It may not work for a particular person. You might want to try to be creative.

Think about a family member that can take in the information without the numeracy. So it won't always work. Explaining the meaning of the numbers given rather than risk. A librarian should not be determining a person's risk. It's okay if you say this is what the internet gives me from this reliable government source about the risk in this kind of situation but I don't know if it provides to you. You should be talking to your provider about it. Don't do any risk determination yourself. There may be something this patient has that you don't know.

What a said for librarians is you never know what people's own life course is and why they might take a course of action, so you never really want to -- what do I want to say -- kind of impose a communication style based on what you think their life situation should be. For my four years at the public library, I know there are so many different things that come out I think librarians should do the same but just to be ready to present numerical information, providers test education materials in advance, we should be preparing information sources in advance too. Maybe a folder at the desk or maybe some stuff on our desktop that we can just pull up if a numerical question comes up. Notice I added comics for librarians. There's a big movement in comics in medicine that's very powerful. There's a great introduction to graphic medicine webinar by another one of our NMLMlibrarians.

And then finally providers are being told to incorporate information intermediaries. Guess what. We are the intermediaries. So we're really the ones -- I've talked to providers so many times and said you're sort of feeling like people don't come to you for explanations but guess what, they leave your office with their after visit summary in your hand and they come straight to the public library. We are a natural connection. So do consider collaborating with communities and health providers in your area. Okay.

So those are my two slides. Back to Michelle. So looking ahead we just want the take away to be that presenting numbers clearly and consistently helps everyone, not only those with formidable literacy skills to know what they are dealing with with their health care. Many of us need help with our math skills. So there's no shame involved. But we all pretty much these days need to be thinking about calculations regarding our health and risks and so to have a source of being on top of those is a good thing. One thing that's coming up on the national level is precision medicine initiative.

This was initiated in January 2015 by President Obama. He announced the initiative. It's aimed at being able to tailor treatment strategies and decisions to an individual's unique characteristics. For example, maybe a cancer specialist would be able to identify the most effective drug or treatment based on the genetic profile of a patient ace cancer. It was really really exciting stuff. But to make an informed decision to participate in something like this, people are going to have to be able to make risk benefit analysis for themselves. So it's going to kind of highlight how important numbers are for health action and health decisions.

So one publication that may be helpful and will appear in the resources slide later is numbers get in the way, again by Rita Rudd. Getting it right. So you'll have that resource later and I encourage you to look at it, if this is interesting. So finally the thought for today, we should not talk one word longer than people are engaged. So I'm so excited that you all stayed with me until this point in the presentation. Michelle also gave a great commentary. It's a quote from Fred Rogers, Mr.Rogers, I feel so strongly but deep and simple is far more essential than shallow and complex.

So there you go. Now I'm going to move on to just sort of wrapping up. I just want to show you the three exercises that Michelle had had as exercises but she actually sort of collected people's answers for these.

I decided to have polls rather than have you all submit the exercises. But if this is kind of interesting to you and you want to take a look at some of these exercises, why not? So one is you might want to take a look at some of these resources and think about where you might share them. Another possibility is to dissect an info graphic and think about how you might explain to and use them with a patron. And then the third, I hate to throw this at you at the very end but, yikes, explain the following. So you're sort of like 70 people, age 65 and over die from falls a day.

That's quite alarming. But if you do calculate it out, I'm just going to give you the answer up front, knowing the population, it's actually 0.05% or five out of 10,000 people. So this is a great example of framing. 70 a day sounds like so many. 0.05 does not sound like so many. And just also again to say that I think during this presentation we've kind of mixed communication between patients and providers and then communication of public health messages. So both are very important aspects of communication but they are quite different, both involving numeracy but again general versus specific to individuals. I decided to look this up because the 5.05% sounded really low to me even though it's a super intense consequence which is death so I'm just going to read to you a few more statements that relate to the situation.

Falls are the leading cause of fatal and non-fatal injuries to the elderly. One quarter of people aged 65 plus have a fall each year. Every 11 seconds an adult goes to the E.R. For a fall.

Every 19 minutes someone age 65 plus dies from a fall. So that's that 70 a day, every 19 minutes, wow. 2.8 million injuries in the E.R. Are due to falls in the elderly. It represents 800,000 hospitalizations and again 27,000 deaths.

In 2013 the cost of the elderly having falls was 34 billion. By 2020, just seven years later because of the aging of the baby boomers, it will double to 6 billion. So this slide when you sort of start diving in, there's so many ways to get the same message out that makes it strong are than that 0.05%. So now moving on to the resource slides, these are the resources that Michelle put out and I just think they are fantastic. I highly recommend then to you. What I will do is send you all the link to the power point that I developed from and then attach to it the slides that I added so that you'll have all of the slides.

And then these are the resources that I wanted to add. I already mentioned Brian fisher's personal health journey. This risk and reason is quite interesting too.

I will also say I often love UK sites because they have a national health service, their national messaging I think is often better developed, but don't quote me on that. We're recording, oh well. This health literacy, it's 164 pages so there's a lot there but there's a section at the end by Helen Osborne who is mentioned at the top of the slide that's really fantastic and you can download a free PDF. So I'm finally going to draw a breath. It is time for questions.

I see that there's some questions that Annie has sent me in Skype. This is from Michelle, wouldn't you want to flip the last example, 200 people die from this procedure? Sure. I think a lot of the way you present things depends on what the patient's kind of approach to it is. Normally you would present the quote unquote positive first. From Melissa, blood infection versus how seriously a disease is treated, very good point. All of these things have to be put in context.

So if you're treating a very, very serious disease, you may be very willing to take a 2% chance of a blood infection. A lot of this deals very much with context. So now I'm seeing from Hannah there's a link.

I'm going to try to get to it really quickly. From the journal of ethics. Yes, beautiful, so if you can see that, the post from Hannah with a link to the journey ethics, take a look at that. From Michelle it seems like the way it's presented on the slide gives negative outcomes more weight. I think that was from that pyramid of benefit. Michelle, I completely agree with you. Stephanie, I don't think it's intuitive to read from the bottom to the stop chronologically. Stephanie, again, I agree with you.

What I think it was trying to do though was show kind of the relative stakes moving upward. But, yeah, I thought it was a little bit of a challenging slide. I'm not sure what I would do to be better, to be honest.

Melissa, what about all of the things we don't know? I'm not completely clear. Sorry, Stephanie. I'm seeing that you're saying the one with the month by month results. Oh, oh, thank you for clarifying that.

Yet again, I agree with you. Back to Melissa saying what about the things we don't know from the CDC. I think I missed the context to that. If you want to repost the context, that would be fine.

Amy, will do. And then I think that was all the the questions so far. Anybody have any other questions or just want to discuss a little bit? I'm just going to scroll back through the -- oh, Julie wrote to me and said pictographs are confusing culturally.

People who did research and when I say pictographs, I should say it's a broader topic than that Icon array. There's a lot of sites where you can see them for people feeling sick or people running or all sorts of other activities. But the point was that these researchers were showing them to all sorts of groups of people varying by age, varying by language ability, I should say English language ability, varying by place of birth, and these that had been tested with say college students did not work for many of the other groups that had a different cultural background.

So kind of the point these researchers were making, and I can track it down, if you'd like me to, is that we think of pictographs as universal but they really are not, so you have to be careful. So back to the questions that Annie is feeding me. From Ellen, how would you suggest sharing this type of information about clinicians? Very carefully. No, I'm kidding. One -- I mean I think there's two things that come to my mind, but I'm just saying this off the top of my head, and I would be happy to research this more are and if I find anything good, send it to you all of I'm sending the e-mail with the recording and all of the other stuff, is to find a clinician advocate who was willing to advocate with their colleagues because I think a lot of these messages are much more likely to be heard coming from a clinics who sees their importance and the higher up in the organization the better of course. Another thing I want to relate is there are these health literacy conferences. There was one in Portland that I attended that kind of felt really kind of career changing for me because I got really excited health numeracy at that conference, and it was a conference full of health care providers. There are only about three of us librarians there, so it was so interesting to be, as a librarian, be seeing how clinicians talk to each other about these things and it's very, very different than the way librarians think about these things.

If you can sort of tag along to that kind of thing, and I'm making myself a note to give a link to that conference or similar conference. It doesn't have to be the one in the northwest. That's the way to be heard. Even try to get on the program. So that's just off the top of my head but I love that question.

Okay. From Amy, how do you recommend that physicians speak to their patients in absolutely versus relative risk. It's a pervasive problem. Yes, Amy, it is a pervasive problem. If patients feel up to it, and I can tell you from my public library work that not all patients feel up to it, they will ask for the percentage.

If the physician says it's 50% higher risk, if the patient can say what's the base line, what percentage of people have this risk? Hopefully the physician could respond to that. I'm getting a lot of Skypes coming in. Hold on a second. To me my answer is still incomplete because I don't have time to think about them. I'm pretending it's a job interview and I have to think on my feet. Okay.

To clarify -- how do you teach patients to talk with doctors to get the absolute numbers I'm stead of the relative numbers? I would give patients talking points. Literally there's nothing wrong with walking into your doctor with a piece of paper that has the questions that you want to ask. What is the base line percentage of people that have this condition? What is the base line percentage of people that have reactions, and therefore given my particular health condition, what do you think that pushes the percentage up to for me? That would be something that I think a provider would probably avoidancering directly, but at least the patient would have a better sense of where the percentage is at.

And then I'm seeing from Michelle to all participants the legacy health system annual health literacy conference. That's exactly the conference I was talking about where it's mostly health care providers, and it was just such a great opportunity to hear how they talked to each other and be great to present to them. So I think I'm coming to the end unless -- let me just see. This does not apply to me so I won't worry about it.

So Stephanie gill, I have something a little complicated to ask or say. Is there a way to join audio instead of typing? Stephanie, I feel your pain but if you could possibly type, I beg to you to type. We don't really have it set up for audio right now.

Is it something that you feel -- okay, I'll try. Bless you, Stephanie. Really appreciate it. Thank you, Michelle.

That saves me from sending that link. I cannot recommend highly enough but it's not the only one occurring in the U.S. If you sort of feel like that's the kind of thing you'd be interested in, look around. But infiltrating from within is awesome. So I'll wait on Stephanie, kindly, kindly trying to express her challenging thing in typing, and then I'll sort of wrap it up and the last five minutes we'll talk about CEand next steps. I'm just waiting to hear from Stephanie. Let me see if there's anything else that I feel like I've missed.

Still typing. Go Stephanie, go. I work with limited English proficiency and often very low literacy patients and families in a pediatric oncology setting.

Communicating cure rates at diagnosis is quite challenging. Wow. I'm sure it is quite challenging. So I'm going to ask you, Stephanie, having seen Icon array, do you think Icon array would be a helpful thing or do you think that it would be one of those situations where let's say that the cure rate is quite low, you don't want to discourage people and you might want to say smaller chance or something. What was your reaction to Icon array for this situation? So I'm hoping Stephanie heard that. I also commit to you, Stephanie, that I will look into this a little more because I think that's kind of -- this is where the pedal meets the metal. I have heard what happens to you happens 100%. There's no getting around that, and so that message is -- I'm really not sure what to say.

So I will do some thinking about that and do some looking at that. I'm actually thinking that I might -- some more from Stephanie. Have you heard the idea that even the cure rate is 85 to 15% chance of falling into either group? No. I have not heard that idea. I'm not completely sure how that works but I wonder if what you mean is that your individual -- yes, so your individual possibility is different than the overall possibility, and it may deal with the fact of you have something already diagnosed, you have under lying conditions, that kind of thing.

So, yeah, this is all really challenging stuff. The thing that I'm thinking I'm going to do is if any of you are familiar with ethno med, which gives information to providers and others about cultural issues related to health care, I will ask them if they have any particular suggestions and get back to you all. I hate to leave with the discussion is getting really interesting but there's four minutes left until the 1:00 and I want to be sure that we get out in time and we get you to your CE, but I do promise not to drop this. Those who want credit, Maddie will momentarily put the link in the chat box. There you go. If you click on this link and follow directions in the link, it will take you through to getting the MLaCEcredit. Please let us know if you have any trouble with it, we'll follow-up on that.

So I'll leave this up for a second. Hopefully, that's all clear. I'm not seeing anybody saying it's not clear. And then just wanted to add this PS, so you may get an e-mail in December 2017 asking you to talk about this class, and that will be from the NNLM. Just want to let you know that's going to happen and it's verified. And then I just want to thank you all so much for coming to the class and sticking with the class. I think there's a lot of way to see improve it but I think Michelle and I are both going to work hard on it and the messages are so important and I feel great that you all were willing to spend your day with us.

Thanks a lot. I will stay on for another few minutes, but otherwise have a great day.

Making Sense of Numbers - Health Numeracy - Ann Glusker - 8/15/2017

OK, so I've started the recording. Great! Well, Hi, everyone. My name is Ann Glusker, I am a research and data coordinator at the national network of libraries of medicine, pacific…

By: National Network of Libraries of Medicine [NNLM]
Cause of Horner's Syndrome Must be Determined before Corrective Eye and…

Is the only way to correct Horner’s is with an eyelift, or can the eyeball sinking back actually be fixed too? I have Horner’s as a result of a surgery and you can see that my right…

By: Amiya Prasad, M.D.