HLOL Podcast Transcripts

Health Literacy

Cindy Brach Talks About the Evolution of Health Literacy (HLOL #246)

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, I’m talking with Cindy Brach, who was the lead for health literacy and cultural competence at the Agency for Healthcare Research and Quality, otherwise known as AHRQ, and she co-chaired the US Department of Health and Human Services’ Health Literacy Workgroup.

Cindy led the creation of many important health literacy tools and resources, including the AHRQ Health Literacy Universal Precautions Toolkit that’s now in its third edition, the discussion paper “Ten Attributes of a Health Literate Healthcare Organization” from the Roundtable on Health Literacy, and PEMAT, the Patient Education Materials Assessment Tool.

I have used and benefited from all of these, as I hope many of you have.

Now retired, Cindy shares her view about the big picture of health literacy at a national level.

On a personal note, I want to thank Cindy for all she’s done to move the field of health literacy forward.

Cindy also is the first to be a three-time guest on Health Literacy Out Loud. Welcome, Cindy.

Cindy Brach: Thank you for inviting me to be here once again, Helen.

Helen Osborne: Once again and once again and once again. Cindy, you’ve been working in the field of health literacy for two decades. From your big-picture view, how has that field changed over time?

Cindy Brach: AHRQ is a research agency, and health literacy first emerged from health services researchers who discovered that people with low literacy were having a terrible time understanding a lot of the material that was out there.

The field initially focused on literacy per se, how to make the written word more easy to understand. There was a lot of looking at signage, facilities and patient education materials, and trying to not make people work so hard to understand what was important to maintain their health.

The field has evolved a lot since the beginning. We, I think pretty quickly, realized that health literacy goes way beyond literacy itself.

Helen Osborne: Beyond the written word.

Cindy Brach: The written word, exactly.

Health literacy in some ways is a misnomer. You know, Helen, that the definition of health literacy doesn’t say anything about reading or writing. It’s literacy in the sense it’s come to mean a competency. We talk about financial literacy. We talk about computer literacy, being able to master in a certain field.

In health literacy, people realized spoken communication was at least as important to be clear about as written communication, so we had a lot of emphasis on trying to teach people to use plain language, to speak slower, a lot of very simple health literacy strategies.

The one that I sometimes call the poster child of health literacy is the teach-back method.

Helen Osborne: Everyone mentions the teach-back.

Cindy Brach: That’s because it is really the only way of knowing whether somebody has understood something that you’ve tried to convey to them.

You ask somebody to explain in their own words what they took from what you told them. That’s when you see how clear you have or have not been.

Helen Osborne: You talked about the written word. As I recall, way back when the term health literacy came about, it was originally called health and literacy. Somebody kind of put those terms together. That was my understanding of how we got it. It certainly isn’t just the written word.

What seemed to be all the rage, if I may say, in the beginning were those readability tools, like, “What grade is this at?” and looking at the number of syllables in a word and the number of words in a sentence.

We collectively, for those of us involved with health literacy, started thinking, “That’s not what it’s all about. That’s a piece of it, but just one piece of it,” and then got to the spoken word.

Cindy Brach: Just before we get to the spoken word, I want to say a bit about the readability formulas. Those are a tool and they are still widely used, but the other epiphany even when you’re focusing on the written word is that’s a small part of making materials accessible.

Making it clear what you need to do, what we call the actionability, what action you are going to take as a result of seeing it, is also an important part, as is layout.

You may have great readability, but you’ve scrunched everything together on a page and made it just very difficult for people to approach it. There are all sorts of things about chunking out text and things around written materials.

That’s, in fact, one of the reasons why we developed the PEMAT, as you mentioned, the Patient Education Materials Assessment Tool. It’s to have something beyond readability formulas to assess, “Is this really going to be understandable to my audience?”

Helen Osborne: Cindy, you and I have been doing this work for many decades, collectively and independently. I’m seeing the whole evolution of it.

That original awareness was about, “There’s a problem. Just because we write something, just because we say it doesn’t mean that that other person necessarily will understand.”

Then we moved into more focus on the written word. That evolved to, “Hey, we communicate in other ways, too, and that includes the spoken word.”

We’re moving along that evolution. You’re saying the poster child for that was the teach-back, which was a way to confirm understanding of the spoken word.

Cindy Brach: But the evolution goes on, Helen. We don’t stop there. We’re still talking about mostly unidirectional communication, where I say something to you, the patient, and messaging.

One of the things that happened in the healthcare field was the advent of value-based payment. That’s a shift. It has not fully shifted, but is headed in this direction from paying just for a service, the fee-for-service system, to paying for actual patient health outcomes and patient reports of their experience of care, so basically the results. What value are you getting?

That was a bit of a wake-up call to many healthcare organizations saying, “We need to engage patients in their healthcare. We spend a few hours a year with them in office visits, but they’re out there living their lives. If we haven’t really fully engaged them, we’re not going to hit our goals for their health outcomes.”

That then brought health literacy really home.

Helen Osborne: In what way?

Cindy Brach: You realize if you’re not effectively communicating with people, there’s no way to engage them and there’s no way that they’re going to be able to do the things that they need to do to take care of their health.

Helen Osborne: That’s the opposite of what you’re talking about, that one-way communication. Now it’s becoming a loop with that feedback, and the patient’s voice is being heard as far as opinions go, as far as actions.

Cindy Brach: Some of the most recent health literacy tools that AHRQ has put out, one is basically around listening as a health literacy strategy. Do not interrupt. Let the patient have a full 60 seconds to tell their story. We know from research that does not happen. They are usually interrupted at about 18 seconds.

These are the patient engagement skills that we need, and then there’s a whole other level. A lot of this, we’re talking about skills that might be skills that a clinician, health educator or somebody who’s interacting with patients might have. You have to take it to the systems level, and that’s where you get to the health literate organization.

Any single person is not going to be able to turn this around. You really need to design the system so that it’s easy for people to enter into the system and get the care they need, when they need it, in a way that they can understand it and do it.

Helen Osborne: Not all our listeners might be from the US. They could be from anywhere. But you’re talking about a healthcare system. Are you talking about going from something about an emergency situation or primary care and seeing your general doctor, all the way to being in the hospital to aftercare? Is that what you mean by healthcare system?

Cindy Brach: There are different ways of thinking about healthcare systems. One of them is sort of like what you were talking about, where there are relationships between hospitals, primary care providers and specialty providers. They all work in the same system, so they might have the same electronic health record, though not necessarily, and are within that structure.

But even a single organization is its own small system in which there’s policy, design, evaluation and things that are going on in that organization that can either support and move forward health literacy, or can hamper the internal health literacy advocates who are trying to make improvements.

Helen Osborne: From my experience and the way that I began in all this, Cindy, I was working at a hospital when I first read about something called health literacy in the mid 1990s. I got it, I wanted to make a difference, I could see that there was a problem and I wanted to try some solutions.

But I was a voice of one, and I tried to spread that word. I tried to do all my own learning. I tried to make a difference. I didn’t have systems behind me.

It was just too hard as one enthusiastic person who knows that this is the right thing to do, I couldn’t do it alone.

I am so appreciative of looking at that big picture, too. We need the voices of one, like I was, like many people are. But we need the big systems, too.

I think that the work you and others at the federal level have been doing is making that possible. We’re getting heard, so I sincerely mean this, my deep appreciation. Health literacy would not be where it is without efforts like yours.

Cindy Brach: It’s not just me, obviously. There are so many pieces. Let me tell you a story that sort of illustrates this.

Several years ago, AHRQ commissioned and developed a training program called Making Informed Consent an Informed Choice. It taught both health literacy and shared decision-making strategies.

It was designed at two levels: one for individual practitioners, and another level for hospital administrators so that they would put together the infrastructure that was needed to support this kind of shift in informed consent.

We were very fortunate to have as one of our partners the Joint Commission, which offered the training for free continuing medical education credit on their learning management system. Basically, anybody affiliated with the Joint Commission could take it for free, and hundreds and hundreds of people did.

But some of those were just that single person in a facility who was trying to move the needle, but finding it very difficult because they were that sole voice.

Then recently, a group called The Leapfrog Group, which uses purchasing power to improve the quality of healthcare, so employers who are . . .

Helen Osborne: Big voices.

Cindy Brach: Right. They issued a voluntary consent standard. They said, “We’re not requiring this yet, but we think that this is the way you want to go. It might become a requirement in the future of how you should be dealing with informed consent from the policy level, to what gets covered in the discussion, to the materials that get used to educate patients.” It aligned almost perfectly with our training program.

Helen Osborne: The one you already had in place?

Cindy Brach: The one that we already had going. Lo and behold, instead of just having individuals from different places taking the training, we’re now getting a lot of facilities that are taking the training, loading it on their own learning management systems and educating their entire staff.

That’s how you can get that organizational shift. It’s bought in at the high level, there’s training throughout and there’s this external driver, the Leapfrog standard, to push them toward that.

Helen Osborne: The fact that it’s from the federal government also means it’s not proprietary in that way.

Cindy Brach: Right.

Helen Osborne: People don’t have to pay for it. It’s available. You said AHRQ is a research group. It’s all evidence-based at the same time, so it’s the right thing. It’s well-researched, well-thought-through and widely available. In that way, it’s made so much happen at all kinds of levels.

Cindy Brach: Yes. That’s also why I’m so excited about the release of the third edition of the AHRQ Health Literacy Universal Precautions Toolkit.

Helen Osborne: I want to hear about that, Cindy. Along the way, you’ve created a lot of health literacy tools about ways to make us help. You were just talking about the one about informed consent. Tell us more about the origin of those tools, and specifically about the third edition of this Health Literacy Universal Precautions.

First, let’s talk about what that is, and then the toolkit that goes along with that one. People may or may not be aware of the Universal Precautions. Let’s start with that.

Cindy Brach: This was not invented at AHRQ. I don’t want to make it sound like this was our idea. Health Literacy Universal Precautions is very similar to blood safety universal precautions. It’s the idea that you don’t know whose blood is infected, so you’re going to treat all the blood as if it might be infected.

For health literacy, you are going to assume that everyone is at risk of misunderstanding. The thing is we all are at risk of misunderstanding. Health literacy isn’t about a particular group of people.

I’ve had a number of incidences, some of which I’ve written articles about, where I’ve struggled as a caregiver for my parents to understand what the medical professionals were telling me.

I was often tired and frightened. Even my regular level of health literacy was not available to me, and so my ability to process that information was very different.

The idea of Health Literacy Universal Precautions is you are going to design your system as if, at any given point in time, anyone could have difficulty.

Really, it puts the onus on the providers, the communicators, the people who are delivering services that if somebody doesn’t understand something, then that’s on us. We didn’t do a good enough job.

Helen Osborne: That puts it into context. Tell us about the toolkit and what’s new.

Cindy Brach: You asked about origin stories. I initially commissioned the toolkit when I felt like the field had a lot of awareness, people like you with Health Literacy Month.

People in healthcare organizations were kind of getting the message that, “Houston, we have a problem,” that something is not going right with how we are interacting with our patients. They just didn’t know what to do about it. It’s like, “Yes, I get it. We need to do better, but what do we do?”

That’s what these implementation tools are all about. They are designed to be easy for busy practitioners to take them and implement them in their settings, and to adapt them to their settings.

For example, with the Health Literacy Universal Precautions Toolkit, each tool was about three pages. Now they’ve gotten a little longer, so maybe they’re three to four pages. They’re just a very short overview, and then action steps, what you can do, with links to resources that can help you dig deeper if you want to.

In the first toolkit, we had 20 tools, which was already a lot of tools and could be potentially overwhelming, but we also had it have a quick-start guide.

It says, “Here are three high-leverage tools, tools that are going to give you aha moments or are going to make a big splash and you’ll see what the impact is. Start with those.”

But we also have a whole process about how to form a health literacy team, how to do assessment and develop a health literacy improvement plan. You can leap in anywhere you want, or you could start in the more methodical way.

With this third edition, to be honest with you, Helen, I thought, “I could do a quick update. I could just fix things that are broken.” It’s so naïve, right?

The last edition was almost a decade ago. It was in 2015, and so things had changed a lot. The tools reflect the importance of the patient portal or other kinds of changes in the way healthcare is delivered.

We also have two brand-new tools. One is Talk About Costs, recognizing that that is a discussion that often doesn’t happen, and it is yet very critical. It feeds into the 10th attribute of a health-literate healthcare organization, which is to be able to tell people before they have a service done what it’s going to cost them.

Then the other tool is Include Family and Friends, the idea that it is not just about a patient, but very often a companion, an adult child, a spouse, and helping embrace the patient team as well the healthcare team.

Helen Osborne: A wealth of resources there. Is there a short URL for that? We will also include it on your Health Literacy Out Loud web page.

Cindy Brach: The URL fortunately has not changed, so it’s going to be the same URL. I believe the short URL will be www.AHRQ.gov/health-literacy.

Helen Osborne: That’s still a mouthful. I listen to podcasts on my walk. Listeners, go look at the web page or do a search for the health literacy toolkit out there, the universal toolkit.

Cindy, reflecting with you on these last 20 or so years, I see an evolution of what’s happened in healthcare, too, not just health literacy.

It’s much more of an engagement. It’s more of a conversation. It’s less about just having stuff done to us as it is fully engaging and appreciating what part health, wellness and illness play in our life.

Looking back on this, reflecting back, I want to hear two parts. Getting back to where you started, you said AHRQ is about research. I want to hear your views about where we are in the research, and I just also want to be thinking about ahead. Where do you see all this going?

Cindy Brach: I guess one of the challenges that I was not satisfied at my performance on in my career was getting the right research done. We right now need research about how to do this work and what it gets you if you do it.

You hear a lot of health literacy advocates say, “In my organization, they want to know, ‘What’s the benefit to us if we make these changes?’” Although I like to say that health literacy is a way to do your work and not new work to do, if you’re training people, there are going to be some costs of switching over to that new way.

I don’t want to frame it totally as a business case. There are benefits in terms of an organization’s reputation, as well as potentially their bottom line.

But you don’t want to set health literacy up to fail in the sense that the way that research often gets done is you look at one tiny thing and you say, “If we change that, what do we get?” It’s a tiny thing in the whole scheme of things.

That classical framework for how health services research has been done has meant that a lot of health literacy research has focused on a very small thing.

A lot of research, unfortunately, is still being dedicated to proving that there’s a problem, showing that the materials are not easily understood. We know that.

Helen Osborne: We got that. I know.

Cindy Brach: We had a great article actually at the end of 2023 in the journal Health Literacy Research and Practice that summarized where we’re at with the research and where we need to go. It was terrific. Barry Weiss is the lead author on that.

I strongly recommend taking a look at that if you’re interested for directions for health literacy research.

Helen Osborne: I agree with you on that one. As a practice person myself and I go to some conferences about research, it’s little micro-steps and often replicating what we already know. Let’s move forward.

Those of us doing the work of communicating with patients or the public every day need to know, “What can I do right now?” Yes, that’s work ahead.

What’s your vision? What’s your hope for what’s to come?

Cindy Brach: The vision and hope, and I like pairing those up because I really do feel that way, is the linkage of health literacy with health equity.

Sometimes when I’ve talked about health literacy over the years, I’d mention a strategy that I call catch the moving train and the idea that whatever is the priority in your organization is a moving train.

Patient safety sometimes is the moving train, and so people have integrated health literacy into their “do no harm patient safety training” or whatever that is.

Right now, health equity is a moving train. We have a lot of interest in addressing a lot of the structural problems in our health system that have resulted in a lot of disparities. Health literacy is a tool that can help do that. The strategies that we use are going to further health equity.

When people understand, when people can access easily, when people can find their way, when people can ask questions, that all is going to help with closing up those gaps. So, I really see them moving forward together.

This has been recognized. This isn’t a new idea. We had health literacy in the last issuance of the National CLAS Standards. Those are the national standards for culturally and linguistically appropriate services.

The Joint Commission now has a brand-new health equity certificate program where facilities can get certified for health equity.

A lot of their tools on the Joint Commission’s website for the resources that organizations can use to achieve that certificate for health equity are health literacy tools. There is a path forward of letting these two support each other and move each other forward.

Helen Osborne: I also see when I introduced you and where you got started, your original work was about cultural competence. It’s come full circle.

I like your metaphor about catching that moving train. The world around us is changing. What are people paying attention to now? What part does health literacy have in all that? How can we help move it forward?

Cindy, my deep appreciation to you for all you’ve done, all you’ve shared and your ongoing advocacy and enthusiasm. Thank you, thank you, thank you for being a guest on Health Literacy Out Loud and telling the whole world about it. Thank you, Cindy.

Cindy Brach: This has been a nice round-off to my career, Helen. Thank you for inviting me to do this last podcast.

Helen Osborne: As we just heard from Cindy Brach, it’s important to look at the big picture of health literacy. From the things we can be doing with the written word and the spoken word and the interaction in the healthcare systems, it’s important to pay attention to it all. But doing that is not always easy.

For help clearly communicating your health message, please 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. You can 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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