HLOL Podcast Transcripts

Health Literacy

Health Literacy: Helping Patients Feel Cared For, and Cared About (HLOL #239)

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.

Today’s guest is Dr. Mark Williams, who serves as Professor and Chief of the Division of Hospital Medicine at the Washington University School of Medicine and BJC HealthCare in St. Louis, Missouri.

Mark established the first hospitalist program in a US public hospital and continues to promote the role of hospitalists as leaders in the delivery of healthcare.

In addition, Mark is an active researcher whose work focuses on quality improvement, care transitions, teamwork and the role of health literacy in the delivery of healthcare.

It’s also Mark and his colleagues that got me started in health literacy. They published a paper in 1995 in the Journal of the American Medical Association, and the title of the paper was “Inadequate Functional Health Literacy Among Patients at Two Public Hospitals.”

At the time, I’m working at a hospital on a psychiatric unit, and everything that was in that paper resonated with me and all my work. I knew I needed and wanted to do something and make a difference so people could understand.

Mark, thank you for getting me started then and for talking with me now about why health literacy still matters. Welcome to Health Literacy Out Loud.

Dr. Mark Williams: Thanks, Helen. It’s an honor to be able to take time to talk with you.

Helen Osborne: I’m your great fan. In that 1995 paper, which was, oh my goodness, decades ago, the conclusion was that “inadequate health literacy may be an important barrier to patients’ understanding of their diagnoses and treatments and to receiving high-quality care.”

Why did you figure that out then? Why does it matter so much now?

Dr. Mark Williams: That’s fascinating. We always suspected as we were learning more and more about health literacy that it was having a profound impact on patient care.

I think what’s remarkable is the extensive research that’s been done since then. David Baker and Ruth Parker led much of this, and I was lucky enough to be able to work with them.

We showed that patients with diabetes and hypertension who had low health literacy had less knowledge about their disease, their diet and how best to manage their diabetes and high blood pressure.

We showed among patients with asthma who had low health literacy, they had much poorer utilization or taking the appropriate steps to use a metered-dose inhaler.

Those are two examples specific to disease. But then there was terrific work published showing that patients with low health literacy had higher mortality, higher rates of visits to emergency departments and higher healthcare utilization.

Many others have done additional research in these areas. There are so many. Dean Schillinger at the University of California San Francisco. Michael Wolf up at Northwestern. You may have actually interviewed some of these people. Just terrific work.

Helen Osborne: I know. I treasure all the people doing this terrific work. Yes, this Health Literacy Out Loud podcast series is almost like an audio archive of the field and how we got started.

But that was almost 30 years ago when this paper came out. You and colleagues were wise enough to know that this is something that needed looking into. There weren’t the thousands and thousands of papers that there are now.

Fast forward to now, you and I and many of those people you’re talking about are still doing this work. From your perspective, why does health literacy still matter?

Dr. Mark Williams: I think because we have not really solved how best to approach it. There’s certainly a lot of recognition. When I used to stand up and when I was originally going around and giving Grand Rounds on health literacy, I’d ask, “How many people have heard of health literacy?” and not that many hands went up.

Now it’s taught in nursing school, pharmacy school and medical school. But I don’t think we’ve necessarily changed what we do on hospital units and in clinics a lot of times as we should.

We are certainly doing better, but I think there’s a lot that still needs to occur to ensure we’re using, as Terry Davis used to say, “living room language” to ensure patients understand.

I’ll never forget Leonard and Cecilia Doak talking about when they would be handing out pamphlets at campuses about management of chronic illnesses, preventive care and so forth. They commented that the professors and so forth always would pick up the brochures that were written in the simplest language, because it was easy to understand.

I think that was a key thing we discovered. I credit Joanne Nurss, who was a literacy expert at Georgia State University, who taught us this concept of functional health literacy.

Somebody can be very literate, like a lawyer, but they don’t have high functional health literacy necessarily, just like I don’t have high functional legal literacy.

People who develop expertise in a particular area, and certainly nurses, pharmacists and physicians do become quite health literate and they even develop their own language, medicalese as I like to refer to it, they tend to use it. They’re comfortable with it. They understand it. But they don’t realize patients aren’t as familiar with this language as they are.

The sad part of this is that patients won’t say anything. They don’t want to look stupid, they fear this, and so they’ll sit quiet. When you ask them questions, they’ll say no.

Helen Osborne: How hard it is to speak up when you’re the person wearing that hospital johnny, you’re in pain, you’re scared, and this all-knowing person shows up, walks in, in a white coat and all authority. Boy, does it take courage to speak up.

Mark, you’ve been doing a lot of work, I know, about hospitalists, bedside care and transitions in care. You and I were talking a little bit about health literacy, not just its origins, but why it matters now. Something you were talking about really intrigued me about the role of trust and the role of trust in health literacy.

Can you put those two concepts together, please?

Dr. Mark Williams: Sure. I think there’s been almost an explosion in interest in trust, not just in our society, but also in healthcare. The American Board of Internal Medicine has invested some funding in research. Even the NIH and others are investing funds in research, looking at trust because there’s recognition it plays such a large role in patient adherence to taking their medications, following diets, showing up for appointments and so forth.

If patients and their family caregivers do not trust the healthcare giver, they’re not going to listen to them.

Helen Osborne: Is it trust of the healthcare giver, which is an interesting term, or the healthcare system, or the healthcare information? When you say trust, my brain goes in many directions. Give us an example.

Dr. Mark Williams: I think in a way it can be all three. Let me start with the latter one. You mentioned healthcare information. As you’re well aware, there’s a big portion of our population in the US that doesn’t trust healthcare information about COVID vaccines.

Let’s talk about healthcare systems. We have such fractured delivery of care in the US that I think a lot of patients and their family caregivers don’t trust the healthcare system.

There doesn’t seem to be one person that they can usually depend on for their care delivery. Historically, it’s been the primary care provider, and that is still the case in many situations.

But with shifting among different insurers, insurers having certain physicians in their network and then out of network and individuals being required to have different insurance companies, there’s been a disconnection honestly between patients and their primary care providers, unfortunately.

Helen Osborne: I also see from my own experience that as patients, we’re almost whittled down to our body parts or our disease. We’re about the only one who knows there’s a whole person behind that.

Dr. Mark Williams: You’re right. You’ll see a patient, they’re hospitalized and they may have five different chronic diseases. Even if they’re not hospitalized, they’re being seen in clinic, which has been shown over again that multiple different specialists are taking care of the patient. They’re looking at their kidneys, their heart, their lungs and their gastrointestinal tract. They’re not looking at a patient as a whole human being.

This is honestly the role of the primary care provider, outpatient clinics and hospitalists in the hospital. That’s what we have to do, be the captain of the ship to coordinate care for patients when they’re in the hospital.

Then I think it comes down on the individual level, and this isn’t just physicians, but it’s also nurse practitioners, physician’s assistants, nurses, pharmacists and so forth. If they’re not speaking in language that patients understand and, very importantly, confirming patients’ comprehension about what the clinician has talked to them about, then you have a high-risk situation of losing or not having trust.

Helen Osborne: In this role of trust, how does that matter in the outcome of someone’s disease course, illness or recovery?

Dr. Mark Williams: I can give you a simple example of patients I’ve taken care of as a hospitalist. I discovered when the geriatrician called me up, who was doing research in following patients from the hospital to their home, that she learned that patients I discharged from the hospital were not stopping medicines that I had told them to stop. They were not filling prescriptions that I had told them to fill.

Then she called me up and told me. She said, “Mark, I discovered these patients don’t trust you.” I was flabbergasted.

Helen Osborne: You’re such a nice guy.

Dr. Mark Williams: The patients said I was a nice guy. But they also said, “He’s not my doctor. I want to check with my primary care provider who I’ve seen for five to 10-plus years and make sure that these are good decisions.”

I had to recognize that, and we began to adjust care and engage patients’ primary care providers to have them call them while they were in the hospital just to say, “Hi. I heard you were in the hospital. I talked to Dr. Williams. I just wanted to let you know he’s a really good doctor. You can trust him.” It made a huge difference.

Helen Osborne: Wow. That’s amazing. Putting together health literacy and building trust, sustaining trust, gaining trust, what other things do you want our listeners to know?

I just want to explain who our listeners are to this podcast. They may indeed be clinicians, but they also might be folks in public health, they might be people at community organizations or just anyone who wants to communicate more clearly about health today.

How can all of us use some health literacy principles to earn that trust and go forth from there as we give our credible message?

Dr. Mark Williams: Over my 30-plus-year career, I’ve been involved in a lot of quality improvement projects. A key factor in determining the success of a quality improvement initiative is if you involve the frontline staff and recognize they are the experts.

I would tell you from a health literacy perspective and patient-centered care perspective that the patients are the experts. They need to be involved in designing the educational programs and be involved in development of programs around whether it’s disease prevention or making healthy changes in diet and so forth.

Helen Osborne: In their own care, or in the greater care that the organization will take on?

Dr. Mark Williams: I think both.

Helen Osborne: Do you want to know what that patient could be doing when he or she leaves the hospital or the clinic, or the whole system needs to change?

Dr. Mark Williams: I think both. I think one organization that has been really a beacon in this and a trailblazer is Cincinnati Children’s Hospital. They now have a whole approach called coproduction, and it’s basically where they’re utilizing patients to help develop their approach to patient care.

The other example I’d give is the Dana-Farber Cancer Center. They have patients on every single one of their committees.

I think this is possible, but you don’t see this being done uniformly.

Helen Osborne: Interesting. That could be applied, I would think, to public health messaging, too.

Dr. Mark Williams: Absolutely.

Helen Osborne: It’s not just the outside experts with a whole bunch of letters after their name to dictate what to do, but it’s really what matters with people.

Dr. Mark Williams: I will tell you from my personal experience that when I sort of realized that health literacy was an issue and I realized that patients didn’t understand me, I realized it wasn’t their fault. It was mine.

Helen Osborne: What’d you do about it? That’s pretty humbling.

Dr. Mark Williams: I changed how I talked to patients.

Helen Osborne: How? Tell us.

Dr. Mark Williams: Then I also used teach-back. I love to give this example. As I’m giving a lecture, I’m usually talking to groups and I’ll say, “How many people here have seen an intern walk in and tell a patient, ‘Tomorrow you’re going to have an angiogram. They’ll probably place a stent. We think this is going to help you’?” Then people in the lobby start laughing.

Helen Osborne: Because?

Dr. Mark Williams: They realize how absurd that is. The patient doesn’t know what an angiogram is. They don’t know what a stent is. But the intern has learned these things this year, or the medical student, and they use that language without thinking about whether or not the patient understands.

I think you just have to thoughtfully translate medicalese into, as I mentioned before, living room language that’s understandable to patients. Use pictures. Draw things. This helps so much.

I do a lot of that, and I also find it saves me time because then patients aren’t confused. They’re not as scared. They won’t keep asking somebody to come talk to them because it’s been explained originally.

Helen Osborne: Mark, you’re reinforcing all that we’ve been learning and doing in health literacy for nearly 30 years now. But you also said we’re not done yet. Are you optimistic we will get there? Are you a little frustrated, like we’ve been kind of making small, little incremental changes, but not the big ones yet?

Dr. Mark Williams: We’ve learned a lot actually, and I’m encouraged by investments in research funding that have occurred. Patient-Center Outcomes Research Institute is funding a lot of work in these areas. We got a very large grant from them to look at the hospital discharge process. As part of that, we learned what matters most to patients.

It was fascinating how patients and their family caregivers brought up issues around communication and clear follow-up as they were moving from the hospital to home.

Then the thing that really struck me, the first thing that kept coming up over and over again, was they wanted to feel cared for and cared about. This told me that trust was a huge issue.

When somebody takes the time to speak to patients and their family caregivers using words they understand, takes time to do teach-back well and takes responsibility that they want to make sure that they’ve done a good job teaching the patient and their family caregiver about whatever medical topic they’re discussing, they deeply appreciate this. They feel cared for and cared about.

Helen Osborne: If I can be so bold as to kind of do an overview of what I get you’re thinking, and certainly what I’m thinking, it’s that I’m optimistic for the future. I’m impressed with all that’s happened over these decades since I first heard that term health literacy and one of your early papers about something called health literacy. Here we are, we’ve learned a lot, but we have more to go.

Thank you, Mark, for being there in the beginning, and keep going with it. I am wowed by all of this and delighted you talked with us on Health Literacy Out Loud.

Dr. Mark Williams: Thanks so much. It’s really been an honor. I’ve enjoyed it.

Helen Osborne: As we just heard from Dr. Mark Williams, health literacy has been mattering for a long time. It did in one of his early papers in 1995, and it still does today. But following those principles of health literacy and communicating in ways patients and the public can understand is not always easy.

For help clearly communicating your health message, take a look at my book, Health Literacy from A to Z. Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at helen@healthliteracy.com.

New Health Literacy Out Loud 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.

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"As an instructional designer in the Biotech industry, I find Health Literacy Out Loud podcasts extremely valuable! With such a conversational flow, I feel involved in the conversation of each episode. My favorites are about education, education technology, and instruction design as they connect to health literacy. The other episodes, however, do not disappoint. Each presents engaging and new material, diverse perspectives, and relatable stories to the life and work of health professionals.“

James Aird, M.Ed.
Instructional Designer