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. These podcasts are a way for you to listen in on my conversations with those in the know about health literacy.
Today I’m talking with Dr. Erin Marcus, who is a general internist at the University of Miami Miller School of Medicine. Before medical school, she worked as a newspaper reporter, and now she freelances and has articles that sometimes appear in The New York Times, The Washington Post, Miami Herald and The Huffington Post.
In 2009, Dr. Marcus was one of three physicians to receive an American Cancer Society Cancer Control Career Development Award for Primary Care Physicians, with her research focusing on research on the communication of mammogram results.
I met Dr. Marcus when she interviewed me for an article about health literacy. Now it is my pleasure to interview her about communicating results from mammograms and other screening tests. Welcome to Health Literacy Out Loud.
Dr. Marcus: Thank you, Helen.
Helen: This topic really intrigues me. That is why I wanted to learn more about it. I, like probably many patients today, am getting my test results in the mail or online. What are learning when you research all of this? Is it a good thing that we are getting our information that way?
Dr. Marcus: I believe it is good for people to have access to their records and findings. However, it is really important that that information is presented in a way that people can understand and framed in a way that gives patients good insight into what this really means in terms of the implications of the finding for whether or not they really have a disease.
Helen: When I think about health literacy, a lot of times we are talking with our doctor or clinician of some variety. He or she can explain what all of this means, but a website or letter seems so disconnected from the healthcare system. Is that part of what is going on? Is it a problem?
Dr. Marcus: That is part of the problem. It is very difficult for many people to access a primary care physician. Primary care itself is really being squeezed. Primary care physicians are being forced to see more patients every day and have less time to communicate with patients and go into in-depth discussions.
It is important to have supplemental ways of learning about one’s results. Unfortunately, what often happens is that the primary care physician may send the person a letter with the results, but they don’t really have time to go into an in-depth discussion of what it means.
Helen: Can you give an example of what might be in those letters?
Dr. Marcus: Mammography is a great example. Probably the majority of women over the age of 40 go for a mammogram every two years. Of those mammography results, a large percentage will be an indeterminate result where the person needs to come back for more views.
Helen: By indeterminate, do you mean it is not cancer, or maybe it is cancer, but it is not fine either?
Dr. Marcus: It is what they call “probably benign.” It is probably not cancer, but these tests are not perfect, especially on the first round, so the person needs to come back for additional imaging, which could be something like an ultrasound test or additional views on X-ray.
What is often used to communicate this is a letter. Under federal law, every woman undergoing a mammogram has to receive a letter explaining her results.
Helen: Do we have to get a letter? It’s not just something my health plan does?
Dr. Marcus: Federal law requires that every woman who undergoes a mammogram receives something in writing. It could be a paper that they give you at the time of the mammogram.
In many cases, mammograms are what we call batch read. That means they are not necessarily read by the doctor who is going to read them at the time the person is there. They are saved and read later that week, and then the letters go out.
The letters are supposed to go out to the referring physician and also to the patient directly, so the patient receives the letter. The patient may not have a regular doctor. They may have just gone for the mammogram without a referring physician having sent them.
They may not have had time to reach that doctor. They may end up getting their letter before the doctor or just not have great access to that doctor. Women often get very anxious about the result when they are asked to come back.
Helen: What kind of wording would be in the letter? Earlier, you said “probably benign.” Would that actual wording be in the letter, or is that just something you are referring to?
Dr. Marcus: There are some sample letters that are online on The American College of Radiology website. They have letters that centers can use. There also are software companies that help breast imaging centers organize results of patients once the mammogram is read. The system will also spit out a letter.
Many centers use it. They don’t have to use it, but to make it easier for the centers, they will often give them this sample template letter. That term “probably benign” is on one of the sample letters that I know the companies use.
Helen: Yikes! Just from health literacy perspective, “probably” is not only a multisyllabic word, but it is loaded with meaning. You are dealing with risks, statistics and all of that. Benign is a weird word, so it seems like that is loaded with problems. Am I right? Am I just overreacting here?
Dr. Marcus: To be fair, after that, they put in parentheses “NOT CANCER.” However, I have found that just using that word benign often confuses people. A lot of women have told me, “I didn’t know what that word meant.”
It surprised me how many people told me that they actually had to look up the word benign. They could not pronounce it. It is a word that physicians and healthcare people throw around all of the time, but it is also a word that we don’t realize much of the public isn’t familiar with.
Helen: Thank you for that example.
I am also looking at one of your articles here. We will have links to your articles on the Health Literacy Out Loudwebsite. This article is called “Mammography Result Notification Letters: Are They Easy to Read and Understand?” It was in the Journal of Women’s Health in November 2011. You are the lead author.
I was fascinated with this. You write, “Problematic wording and notification letters and suggestions for improvement.” You have wording like “the area of concern,” instead of saying something like “the part of the breast we need to study.”
One of them that I thought was really interesting, and it must be in a real letter, is the term “pathologic analysis.” You could more simply say “lab studies.”
Dr. Marcus: As I said, it is a federal requirement that everybody get letters. To comply with this, some of the language is legalistic. It is not how we would talk to people, but the reality is that you are sending this out to the general public.
When we did focus groups with low-income women in South Florida who did not have great access to care and discussed with them their experiences learning of this, the ones who had been called back said they had felt very anxious.
We showed them the letters. They found them really confusing. They also weren’t familiar with the statistics that it is very common to be called back after a routine screening mammogram and that most of the people who are called back do not have breast cancer. They said, “How come nobody tells us this in advance?”
Helen: That is not in the letter either. I know because I have gotten all of these letters and all of this feedback. Being called back is bad enough, but not even understanding why makes it worse.
There is also this concept out there about dense breasts. That one has actually got me befuddled. What is that all about? That’s part of the letters too, isn’t it?
Dr. Marcus: There has been a movement over the past five years or so to include in these letters information about what is called density. When the radiologist looks at the mammogram, different women have different density.
Density is a radiological term. It refers to how dense the breast looks when they look at it on an X-ray. If there is a lot of fatty tissue, the X-ray itself is able to go through. It is what we call more radiolucent. The tissue itself is going to look darker.
A cancer usually sticks out as something that is white. There are a lot of things that can stick out as white, but cancers have a distinctive appearance and they will stick out.
However, if somebody has very dense breasts, the breast itself looks more white on the mammogram. It is harder for the doctor to see the white that could represent a tumor because the breast itself is not as translucent.
There has been a movement to try to require that women also be informed in writing either of their breast density result or of their result if they have dense breasts. The idea is that these women may want to consider additional screening for breast cancer with tests such as ultrasound.
Helen: Erin, this is fascinating. You are having a hard time explaining to me about breast density, and people need to hear about this in their letters. That is a really hard concept in there.
You are talking about other screenings, anxiety, and reframing this in terms of something that is not a personal intervention. That is just loaded with problems. What can we do about this? That is a real pickle.
Dr. Marcus: Regardless what you think about the legislation, if you are going to pass this legislation, it is really important for women to be educated about this and informed that they are going to get a letter, which a lot of women don’t realize.
Let’s go back to the basics. First, women need to know before they go for their mammogram how common it is to be called back. Second, they need to know that this letter may include information about this concept called breast density and what it means.
Then the letters themselves need to be written in a way that complies with plain language principles of trying to avoid jargon, using easily understandable words and not using huge blocks of text that people have difficulty reading.
Perhaps they can use pictures. Density itself lends itself to pictures because you can show pictures of what a dense breast looks like on a mammogram versus a not-dense breast, so the person can get a concept as to what we’re talking about.
There is definitely a lot of work that needs to be done in this area in terms of communicating these results. My American Cancer Society research focused on low-income women who did not have great access to healthcare and among whom there is a higher prevalence of low health literacy.
When I tell women I am working on this project, it doesn’t matter the educational level of the women. I get all of these stories from people saying, “I got this letter and I have no idea.” These are people with graduate degrees who are very literate. It really behooves the medical profession to communicate this information in a clear-language way.
Helen: I am so glad you are championing the cause because I agree with you. Yes, I can understand basic health information, but I get befuddled when it is my body we are talking about.
Dr. Marcus: Breast cancer is a disease that is much more emotionally loaded than a lot of other diseases for a variety of historic reasons. There has been survey after survey that has found that women fear breast cancer more than any other disease.
While it is important to communicate well regardless of what disease you are talking about, I think that any efforts to communicate in this area have to be very cognizant of the anxiety that people feel about breast cancer.
Helen: Thank you for that. As I am listening to you I am hearing all of the strains that I talk about why people struggle to understand health information. I am so glad you talked about the role of emotion.
You also addressed literacy and language. We are talking about context here. There are so many factors. I’ve got it at a personal level, as well as a professional level, that there are problems with communicating this way, but thank you for those solutions of how to do it better.
Do any of those principles apply to other test results? I’m thinking of my own experience. If I go for a blood test or whatever kind of test, I might get an email saying, “Your test results are on the website.” It is a secure website, but then I go see all of these numbers. I have no idea what they really mean. Do you have recommendations for that too?
Dr. Marcus: That’s a problem when you just let people see numbers and they don’t know. If you have somebody who is astute in using the internet and the web, there are certain sites that I would certainly recommend as sites of reliable health information. One is www.MedlinePlus.gov, which has reasonable information for explaining things.
The American Heart Association, The American Lung Association and The American Cancer society are pretty reliable sites. You have to be careful when you go on the internet in terms of trying to take into account where the information is coming from, but if you go to www.MedlinePlus.govor those other sites that I mentioned, you are going to get reliable information.
For open access to health information to really succeed in raising the knowledge of patients so that they can use the information effectively, you really have to have an activated patient who will ask, “Where can I go to learn more?”
Helen: The good news is that we are getting this information. We aren’t just sitting around passively waiting for somebody to interpret it for us. We are getting it sooner and faster.
Those are probably all good things, but from the way you’re talking, it sounds like we as patients, family members and caregivers almost need to be scholars about what to do with this information.
Dr. Marcus: Not scholars, but we need to be activated to learn more. Some sites may provide you with links to sites where you can obtain more information, but you have to be careful. When you are googling, you have to be careful about where the information is coming from. It does require a more activated patient.
Some people don’t want that. Some people would rather have a nurse practitioner or a doctor take that information and filter it out. The old way of doing it before everybody had access to their electronic medical records was basically that. Your healthcare provider would look through it and filter out what was and wasn’t important and tell you.
Helen: I know you are a practicing physician. Are you seeing a population that is more activated? Maybe we’ve got a way to go. Your research sure shows that, but are you seeing movement in this direction so people are getting more comfortable using this information in a meaningful way?
Dr. Marcus: I think people are getting more comfortable with the idea of the internet. I work with mostly a low-income population. There is a digital divide in this country. Especially my older, low-income patients don’t have great access to the internet or they don’t feel comfortable with it.
With my younger patients, it is very common that I will often pull up the www.MedlinePlus.gov site for them or we will search for some information. They are comfortable with that. As the younger generation that grew up with computers and the internet ages, you are going to see more of that.
It is still important for people to know where they are getting the information and to be prepared and educated about how to search the web and judge whether a site is reliable or not.
Helen: I am hearing so many recommendations from you. I have learned a lot not only about those of us who might be the ones helping to write similar letters and use not just the wording but pictures, but also about what to do in person, looking at websites together, helping people be more activated, and also for our own learning.
Here’s the last question. What keeps you excited about this?
Dr. Marcus: It is really gratifying. Now we are testing a brochure for women who have incomplete results. It shows them the numbers in a very basic way and explains the meaning of their findings. It is very gratifying to speak to women who receive this brochure.
For example, a lot of them say that it helps calm them down, that they are just glad to have something to hold onto and that it helps them put things in perspective. That in itself is really gratifying.
Otherwise, the women say, “We’re all alone when we get this information. It makes us very scared. At least now we have this additional knowledge about how to interpret this and what to do with the information.” That is very gratifying.
Helen: I thank you for all you are doing. You are helping all of us be more activated when it comes to test results. Thank you for sharing this with the listeners of Health Literacy Out Loud.
Dr. Marcus: Thank you.
Helen: I learned so much from Dr. Marcus, 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 monthly enewsletter, What’s New in Health Literacy Consulting.
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Tell your colleagues and friends about this podcast. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.