Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z. I also produce and host this podcast series, Health Literacy Out Loud.
I’ve been focused on health literacy for many years and have seen this body of knowledge evolve and grow. One area I pay a lot of attention to is the definition of health literacy.
That’s why I was especially intrigued to read an article by Christine Wilson of the National Patient Advocate Foundation, or NPAF. The article was titled “Can We Redefine Health Literacy?” I am delighted that Chris agreed to talk with me about this on Health Literacy Out Loud.
She’s focused on health communication throughout her career. Chris’s experience includes being Vice President for Marketing and Communications at Fox Chase Cancer Center in Philadelphia, and being Vice President for Communications at the American Association for Cancer Research.
Chris now is Vice President for Advocacy Communications at NPAF.
Chris always brings in the patient’s voice and the patient narrative to make complex medical and scientific concepts understandable and meaningful, including to the definition of health literacy.
Welcome to Health Literacy Out Loud.
Christine Wilson: Thank you, Helen. I’m delighted to be here with you.
Helen Osborne: Your article really resonated with me. It’s pretty short. It’s right to the point. Of course, it has a story and a narrative in it. You talked about how health literacy had been a one-way street, but you don’t really agree with that. And neither do I. I think that’s probably why your article meant so much to me.
What do you mean about this one-way street of what health literacy was?
Christine Wilson: I think the old model of healthcare, health literacy and health communication was very much a one-way street. It was the health provider, primarily the doctor, telling the patient what the patient needed to know, and expecting that the patient would understand and act on that or adhere to a treatment plan.
But I think as this whole notion of patient-centered care has worked its way into not just our language, but actually our care delivery system, there’s been just an increased awareness of the fact that it’s really important to understand what’s important to the patient. It’s important to listen to them. It’s important to hear their stories.
I think that whole notion has begun to shift the idea of what health literacy is. It’s no longer just on the patient to understand what the doctor is telling them. It is now a two-way communication in which both sides are giving and receiving information and sharing it.
Helen Osborne: Can you give an example of that?
Christine Wilson: Sure. Over my career, I’ve had the really great privilege of talking to thousands of people who are facing major illnesses. I’m always amazed, for one thing, at how much they do understand and how sometimes they deal with their own experience.
I remember a woman that I interviewed a number of years ago. She was young. She was in her 30s. She had small children, and she had been diagnosed out of the blue with Stage 4 breast cancer. Her first and only thought was that she was going to die and leave behind her children.
They were trying to explain to her that this was treatable. It happened to be a HER2-positive tumor, which means that there’s a lot of treatment for it these days. But she really wasn’t understanding what they were talking about. All she knew was she had very advanced breast cancer.
Finally, she was able to say to them, “Do you know what I want to know? Am I ever going to be able to coach my daughter’s softball game again? Am I ever going to be able to take them on vacation or go hiking in Maine?”
It wasn’t that she was illiterate. She needed to hear something different from them in order to understand why the treatment was important and what she was going to be making decisions about. She was a very intelligent woman, not at all an illiterate person.
I think none of us are literate when we come to a serious medical diagnosis. Nobody starts off knowing how you treat Stage 4 breast cancer, multiple sclerosis or even diabetes. It’s something we all have to learn.
Helen Osborne: Boy, your story is just resonating with me in so many ways. It’s not a one-way street. It’s not just giving her a handout or saying a diagnosis. It’s really putting it in context of that woman’s life and what’s important to her.
Christine Wilson: Absolutely.
Helen Osborne: For this health literacy and what you’re coming to as this new definition or understanding about this, is it different for someone like this woman who was just newly diagnosed? Is health literacy different if you’ve been living with a disease for a while or you’re in treatment now? Does it change over time?
Christine Wilson: I think that’s an excellent point, Helen, and I think it’s one of the most important points. I think anyone who faces a major diagnosis is initially in shock. That metaphor of entering a whole foreign world with a foreign language is absolutely right.
But there are so many more diseases now that used to be rapidly fatal, within a few weeks or months. I talked to a gentleman the other day who has been living nine years with Stage 4 lung cancer. That just was unheard of. It’s remarkable.
But he’s not alone. There are so many diseases now for which there are treatments that make what used to be rapidly-fatal diseases into chronic diseases.
People live with them, and as they live with them, as with anything else, they learn about their disease, the healthcare system and their treatment options, and they become increasingly literate.
This is not a light switch in any way. I think healthcare professionals have to be aware that you don’t just tell people something and then expect that you’ve done that. It’s an ongoing process of making decisions, of deciding what’s important to you. Your patients become much more literate as they move through this process.
Helen Osborne: I’m thinking of that image of a one-way street. I’m wondering about the provider’s health literacy understanding of each patient as well. Not everybody with the same diagnosis understands the same way. Each provider needs to understand each patient’s level of understanding. Is that a way of looking at it?
Christine Wilson: I think it is, and I also think it’s important to realize that these are skills. Some people are better listeners, better at hearing things or better at understanding naturally. But all of us can develop better skills.
We can learn how to listen actively to somebody. We can learn how to ask a few critical questions that will help reveal what that person does understand or what’s important to them.
I think it’s incumbent upon the healthcare system to educate all of their professionals. Doctors, nurses and nurse practitioners play a really key role in all of this, to know what it means for them to be health literate, and to be able to create those safe spaces and those situations in which they can have those exchanges and create that two-way street.
Helen Osborne: I guess continuing with this driving and road metaphor, as you’re talking about it, I’m seeing it more as a traffic rotary, where there are different ways to get on, different ways to get off and people entering and leaving all at different times. But it’s a somewhat organized way in a rotary, it seems.
Christine Wilson: That’s a great metaphor.
Helen Osborne: You like that?
Christine Wilson: I love metaphors. That’s a great metaphor.
Helen Osborne: You talked about a one-way street. No, it’s a two-way street. No, how about it’s a real circle?
Going along with this circle, you and I both like that metaphor. Maybe our listeners do, too.
Let me tell you about the listeners to Health Literacy Out Loud. We might be clinicians. That’s certainly my background. We might be in public health. Maybe it’s people who are involved with community organizations or people who just care about communicating and communicating clearly.
From your vantage point and experience, what can each of us be doing to improve health understanding?
Christine Wilson: Part of it is building into the notion of what it means to be a good health provider, that this is part of your job, your mission. It’s part of how you become a good practitioner.
I see that happening in a number of the medical school environments. I had the real privilege of doing a five-part session on active listening with a group of Temple University medical students.
Helen Osborne: Temple down in Philadelphia.
Christine Wilson: Yes, Temple in Philadelphia. Exactly. They were a very diverse group. This was not required. They were all volunteers and fitting it into their busy schedules.
I was really impressed by how these young people wanted to learn how to listen better to their patients, wanted to learn how to tell their own stories better, as a way of becoming better doctors.
I think it’s building it into what it means to be a doctor, clinician or nurse practitioner. I’m not saying it hasn’t happened, but I think it’s happening more and more, and in a much more conscious and purposeful way. That’s very much part of it.
Helen Osborne: That’s neat. We need to just be better listeners, not just talkers.
Christine Wilson: Absolutely.
Helen Osborne: How does one become a better listener?
Christine Wilson: As I said, there are some skills that you can actually build to become a better listener. I think awareness of the importance of listening is important.
If you think about how often any of us have been in a doctor’s office and the doctor’s eyes are glued on the computer screen, they’re not really looking at you and you can see that they’re worried about moving on to the next appointment. That’s not listening.
That doctor may be getting the critical information he or she needs to make a treatment decision, but that person isn’t really listening to you.
I think the system needs to create some room for that, and room means time. It’s one thing to just go in and get your flu shot. It’s another thing if you’re going to be told that you have a diagnosis of cancer or multiple sclerosis. You need a much longer amount of time for that conversation, and you need a safe space in which to have it and which you feel that you’re being heard. I think the system has some responsibility in that regard as well.
Helen Osborne: I’m making some notes here. We need to be better listeners and be in a safe space for that conversation. We need to have systems that support that.
Christine Wilson: There is one more thing I’d really like to stress, Helen.
Helen Osborne: Yes. What?
Christine Wilson: That is that no matter how good the information is . . . I’ll give you a personal example. About 10 years ago, I was diagnosed with thyroid cancer. I’ve spent my entire life in healthcare, especially in oncology and cancer, and I knew a lot about it. But when the doctor said to me, “You have a certain type of thyroid cancer,” I felt like I didn’t know anything.
As I plunged into the information world, I realized that unless you know exactly where you are, that information is useless.
If you’re just told that you have breast cancer, for example, you need to know the stage, the type and the genetic information. If you just go on Google, even to the best possible resources, and you’re actually quite a literate person, you’re still not going to understand how it applies to you.
You mentioned context earlier. I think a very specific context of knowing where you are in whatever disease world you’re living in is really critical.
Helen Osborne: As you’re talking about that, and I’m thinking of the name of the organization you’re with now, the Patient Advocacy Foundation, it sounds as though that’s a skill that we as patients and caregivers need to have along with that of our providers.
Christine Wilson: It is.
Helen Osborne: How to speak up and how to advocate.
Christine Wilson: We’ve actually done quite a lot of work. We do a lot of workshops and training modules that are really dedicated to communicating better with your physicians, or telling your story.
One of the things I love to stress with people is that your story isn’t just one thing. Your story is many stories, just as you have many things going on.
Trying to teach people to tell their stories better in specific situations, like when you’re in the doctor’s office or when you’re talking to a media person. It’s going to be a little different, and you have to think about that.
I try to teach people to bring a much broader, richer view to what their own stories are, and then to turn those kinds of insights into skills for their own communications.
Yes, it’s definitely something that patients, advocates and caregivers can learn to do better as well.
Helen Osborne: You’re an inspiration for doing this. Thank you for sharing your story.
For listeners who do want to get better at this, and that’s probably all of us. We all want to communicate respectfully and in ways people can understand and get the information we need to make decisions in our lives. What are ways you suggest we start learning more about this? You’re just giving us a quick overview about it, but are there ways to start learning more of these skills?
Christine Wilson: I think there are resources out there. We certainly have a number of them at the Patient Advocate Foundation.
Helen Osborne: What’s your website?
Christine Wilson: There are two. There are really two organizations.
The Patient Advocate Foundation provides direct services to people who are facing serious illness. We can actually offer you almost a personal patient navigator if you’re dealing with something and you don’t understand it, you’ve got a pile of bills you can’t figure out, you don’t know what your insurance covers or you just don’t understand what the doctor said to you.
We don’t prescribe treatments or anything like that, but we do help people literally navigate through the system and become more literate about the things that they’re dealing with so they become better advocates for themselves.
Helen Osborne: That’s something your organization does? Is that at no charge? Is that for a fee?
Christine Wilson: No charge.
Helen Osborne: Wow. What’s the URL?
Christine Wilson: It’s www.PatientAdvocate.org.
Helen Osborne: Great. We’ll have that on your Health Literacy Out Loud web page.
You said that there’s a second arm to your organization?
Christine Wilson: Yes. That’s my arm, the National Patient Advocate Foundation. What we try to do is to really become the voice of the patients, to bring their voices to the forefront, to deal with the critical issues they’re dealing with. Try to influence policy where we can, and really create that national dialogue about health equity, social justice or health literacy.
Helen Osborne: How would someone get there? What’s that URL?
Christine Wilson: We are www.NPAF.org.
Helen Osborne: Great. Thank you.
Christine Wilson: There’s a lot of information on there. The PAF site also has a ton of resources that are really designed to be very accessible to people. We’re just finishing a big section of sheets on how to understand and access your health insurance.
Helen Osborne: Whoa. That’s a biggie.
Christine Wilson: That’s one area where nobody is literate when they start.
Helen Osborne: No. A specifically US issue, that’s for sure.
Christine Wilson: Yes, it is.
Helen Osborne: Thank you for raising that question, how we redefine health literacy. I think you’re really starting to open that conversation up, and I so much appreciate that. I appreciate all the stories you’re sharing, resources and ways to keep this conversation going.
If everything worked the way that you wished that it would on health communication, what would health literacy be like?
Christine Wilson: If you’re asking me for my ideal world, I think whenever anybody finds themselves facing a serious diagnosis, as I said, whether it’s cancer, diabetes, whatever it is, that there would be somebody who would be there to help them navigate that.
It doesn’t necessarily have to be a doctor, but somebody who would say, “Do you understand this? Can we talk this out? What questions do you have? What are you worried about? What is the thing that you’re most concerned about?”
Sometimes the thing that people are most concerned about isn’t whether they’re going to get chemotherapy. It’s how they’re going to get to the chemotherapy, or who’s going to watch their kids while they’re doing that.
That sense of navigation, I think, would really help both the healthcare providers and the patients create that safe space if we created that two-way communication. Some kind of navigator for pretty much anybody who finds themselves in that situation.
Helen Osborne: Thank you for helping us navigate this. I appreciate all you’re doing, for the article you’ve written, and we’ll have a link to that, and for sharing it with us on Health Literacy Out Loud. Thank you, Chris.
Christine Wilson: Thank you, Helen. This is a very important topic for me as well, and I really appreciate you giving me the opportunity to be with you today.
Helen Osborne: As we just heard from Chris Wilson, the sense of what health literacy is, is evolving. It’s no longer just a one-way street. It might not even be a two-way street. Maybe it’s a rotary when we can all get on and off where we need to in this whole sense of health communication and health understanding.
But clearly communicating about health is not always easy. For help with your health message, please take a look at my book Health Literacy from A to Z.
New Health Literacy interviews come out the first of every month. Get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.
Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.
Until next time, I’m Helen Osborne.