Helen Osborne: Welcome to the first episode of something new I’m trying with Health Literacy Out Loud. Yes, I’ll continue with those focused interviews that I’ve done many, many times before, but I thought it would also be fun to try something a little different. For now, I’m referring to this as “Health Literacy Now and Then.”

My plan, my hopes, are to talk briefly with a health literacy advocate or innovator or leader and look back with that person to the policies and research and strategies that shaped health literacy practice. We’ll discuss what worked then, what still works now, and most importantly, where we think health literacy might go next.

A good way to start this is by reflecting on some older Health Literacy Out Loud podcasts I’ve recorded, some with legends in the field. This time, I want to be focusing on a podcast I did with Len (Leonard) and Ceci (Cecelia) Doak. Len and Ceci are a husband-and-wife team whose work was considered then, and still is by many including me, foundational to everything we consider as health literacy. Sadly, Len and Ceci have both since passed on,

My guest to discuss this with me is Dr. Linda Ciavarelli who I recently interviewed for a Health Literacy Out Loud podcast about immersive technology and virtual reality for patient education. Linda’s clinical background is in primary podiatric care. She now is co-founder of Housecall VR, an innovative startup dedicated to creating virtual reality for patient education.

I am so impressed with Linda’s innovative efforts to move forward when it comes to patient education. I am also curious, as a somewhat newcomer to health literacy, about what Linda thinks of our roots and our beginnings. That’s why I wanted to talk about that podcast with the Doaks together. Welcome, Linda!

Linda Ciavarelli: Hi, Helen. Thank you for having me on here and having this conversation. It is great chatting with you again.

Helen Osborne: It’s wonderful that you’re willing to give something new a try. Linda, that’s what you’re doing with your immersive technology and one reason I look to you.

You’re doing something as far ahead as anything I’ve done. I started health literacy a long time ago at the time of the Doaks, about 30 years ago. That’s why I thought that together we can have a conversation about where health literacy was, is, and where it might go.

I first interviewed the Doaks in 2009. At that time, we spoke a lot about their book that they co-authored with Jane Root, Teaching Patients with Low Literacy. At the time that the Doaks were doing this work, almost all our information was written. The Doaks talked about how to assess written materials, how suitable they are. That was the primary vehicle for patient education.

Linda, how long have you been focusing on health literacy and patient education?

Linda Ciavarelli: Well, first off, it is an honor to stand on the shoulders of all these giants. That includes you. And to have a conversation about this and look backwards and also forward.

Helen Osborne: Oh, thank you.

Linda Ciavarelli: Having a chance to reflect on some of the work, the foundational work that’s been done is just incredible, especially for myself who’s working a lot of the time focused on the future. It’s very helpful to take a moment to really reflect on the past.

Thank you for putting this together and for asking me to consider it in this way. I’ve been in private practice for over 20 years. So as a clinician, I’ve been a health literacy professional for most of my clinical years. That’s a lot of what we do, especially those of us who are dealing with chronic disease. But even if it’s an acute disease, there is a huge ask of clinicians to explain what is happening. That’s a big part of education. I may have shared with you that I was doing a talk on health literacy. There were maybe 250 providers in a conference. I asked if anyone there had had any formal training in patient education. Not one hand went up.

Helen Osborne: Oh dear.

Linda Ciavarelli: I know. That is that is so sad for me. No one taught me how to teach patients. It was something that I learned through trial and error. So to answer your question, it’s been it’s been over 20 years plus my training time in a hospital, just learning how to how to interact with people to make sure they get information that they need.

Helen Osborne: I’m glad you talked about training. My background is a clinical one, too. And no, I never had a class, a course, a lecture, or anything at that time about health literacy. I learned about that from the Doaks’ book. I actually have two copies on my bookshelf. Those books are dog-eared at this point. I’ve looked at them so many times.

Let’s talk about some teaching strategies, especially since you’re coming up with really awesome, innovative ways. The Doaks talked about the printed word. Do you remember when printed word was the main way we communicated?

Linda Ciavarelli: Yes, yes. And, you know, frankly, that’s still the case. For most of us, I mean, most of us are patients. Our family are patients, too.

When you’re in the hospital or in a health care setting, although the spoken word is a large part of that, your backup is written. In the state of Delaware, where I’m based, about a third of Delawareans are not proficient readers. It was very interesting to hear them talk about the grade level disconnect where they were looking at the written material that was given to patients, which was written at a 12th grade level, I believe.

Most of the people they found were reading at a 5th or 6th grade level. Those folks are just not getting the information that they need. Another thing that the Doaks talked about, which really, really rang true with me, is the fear of embarrassment that patients have.

I still practice in a very small capacity that I have to fight against. You know, we’re always under time pressure. Hearing them say that patients will just say yes because they don’t want to be embarrassed to admit that they don’t know something. That really, really rang true with me. And I thought, you know, thank goodness that they were working on this and creating this field, writing these books and really addressing that.

Helen Osborne: Thank you. You also talked about reading. Just yesterday, I was in a bookstore with a friend buying things for our grandkids. My friend and I talked about our grandchildren and reading. They’re not reading as much, whether by choice, or by life. Reading doesn’t seem to have the same place in their lives that it did in mine growing up.

I want you to put on your technology hat or goggles or whatever you do, because that’s your world. Is that how people are learning that these days, more through technology than through the written word?

Linda Ciavarelli: Oh, yes. I think we can we can see that with our media that we’re consuming. Most small-town papers are no longer. We see that. That’s a big trend. People aren’t reading the newspaper anymore. We got the local and national newspapers for years.

Now all our media is consumed. There’s written, but it’s certainly digital, short form video. I know my kids get the majority of their information from short form videos, from TikTok videos, from Facebook videos, Instagram videos. That’s the reality of how people are getting information.

Helen Osborne: I hope people will go back and listen to the interview you and I did specifically about immersive technology. Give us a little tidbit here about why you decided that’s the way you want to be providing patient education in the future.

Linda Ciavarelli: We use virtual reality to help people understand what’s going on inside of their bodies. We use VR because we’re going to be able to understand what’s going on inside of their bodies. The educational task, it involves an abstract, invisible physiology.

Whether it’s a written word, a video, or a plastic heart model, we’re still asking the patient to imagine something. What virtual reality does is it reduces the dependence on the written word and creates an experiential understanding that is far superior to written word or even videos. It standardizes the explanation. And it creates a focused learning environment. You can’t do anything else when you’re in these goggles.

It also gives the educator a common visual reference to build from. So, for example, we might use a metaphor that many folks are familiar with where we say insulin works like a key to open a cell. We actually have a key. That key that can be where insulin opens the cell for glucose to get in, that’s represented in an actual key. And that allows the educator or the clinician to have a common language when they’re discussing this. So that’s why we’re using this technology specifically in the space.

Helen Osborne: Thank you. And that leads into a point I wanted to make about having a common language. Whether it’s in print or spoken word or what you’re doing in your immersive technology, words still do matter.

There’s a story that the Doaks shared on that podcast, and I’m going to kind of summarize a little bit now. I want to get your take on that kind of the yesterday, today, and tomorrow version.

Len and Ceci talked about visiting a kidney dialysis clinic to talk with patients about their materials. They were always into user testing. It may not have been called user testing but wanted feedback on it. I applaud them and we’re still doing that these days.

One of the materials they wanted to ask the patients at the dialysis clinic had to do with the diet, what patients could eat. The directions said that if you’re on dialysis, you should eat red meat, but avoid shellfish and poultry. The Doaks asked a patient what are you supposed to eat? What do you eat? The patient said, sometimes I have chops or steak, but fried chicken is what I eat the most. And then the Doaks asked him, what about poultry? And the patient said, no, I don’t eat poultry. We’re not allowed to do that. We’re not allowed to eat poultry.

As the Doaks explained to me, you go to the grocery store but there is no aisle labeled poultry. There’s chicken, there’s turkey, you know along that line. Poultry, they explain, is a category word. They said that when we as clinicians communicate that way, our messages are not nearly as effective as we pretend they are.

What is your thought about that use of category words? And if I can just add that poultry is a fairly simple two-syllable word. It takes up less space than saying chicken and turkey. What do you think of that story? Then, now, looking ahead?

Linda Ciavarelli: When I listened to their podcast, that was definitely a moment that stood out for me. Anyone who’s been in clinical practice has probably had a similar experience.They remind us that what we’re transmitting is not always what’s received. That’s not a function of intelligence. This has to do more with word choices.

I also really loved that they were using user-centered design, even then. That’s a big thing now. Something that we’re really passionate about when creating something, we start with the user and ask how is this actually going to be used.That was a great example of user-centered design, actually going to the person who is going to use it. I think a lot of the time that’s overlooked.

Now with newer technologies and certainly in our field, there’s a lot more opportunity in scaling in digital world to do that. To give people more opportunity to get input into design. I’m hopeful looking back and hearing them use that. Using it now and then in the future, really using the tools that are there, thinking about the Internet that really standardized at scale. I didn’t wasn’t the first to say this, somebody much smarter than I did. They said that we use the Internet to standardize at scale and now we’re going to use AI to personalize at scale.

Helen Osborne: Okay, I just want to stop you. Word choice. You say “at scale.” You’ve used it twice. Explain to me. The internet communicated at scale and AI is personalizing at scale. Just make that clear.

Linda Ciavarelli: When I say it’s scale, I mean for everybody. When I was a kid, I had to ride my bike up to the library in Charlotte, North Carolina and pull out a book and have the book. nobody else could have that book that day. That information was just for one person.

Now with the internet, we are able to take that book, that information, and put it out there. Everyone can have access to that information at the same time. It wasn’t just one person. So that’s what we mean at scale.

When we think about that standardized at scale we’ve now made that book available for everyone. But it’s a standard piece. Now when we think about one of the wonderful things that AI can do, and there’s certainly a lot of debate about all the terrible things that AI will do or can do, but thinking about one of the wonderful things is that being able to actually personalize experiences for everyone now. Imagine that the book reads differently for me than it does for you or for someone else. It can be available for everyone. That’s what we mean by scale.

Helen Osborne: Thank you. I’m so glad you included AI, which is really looking ahead. To me, that’s providing some context to for what we’re doing. It’s not just like, oh, here’s an idea I just thought of. But what does it mean for you to put older ideas into context as you move forward? You said you’re a very, very forward-thinking person. How has that mattered in your work and your life to kind of look back a little bit while you’re looking forward?

Linda Ciavarelli: I love that question, Helen, because it requires thought. thoughtfulness and deliberateness. In today’s world, things can happen so quickly that it’s incredibly useful to go back to the foundational learning and not try to reinvent the wheel, not trying to create something wholly new out of nothing.

But like I said, really, truly to build on the shoulders of these giants. I’m curious what you think about it. I mean, what are what are your thoughts on that? If I can interview you?

Helen Osborne: Yes, please do! I think a lot about where health literacy was I’ve been doing clinical practice for a long time and then health literacy singularly for about 30 years. Sometimes I meet up with newcomers doing cool new stuff. I might say something about the Doaks. But they ask, who are the Doaks?

I think that this Health Literacy Out Loud podcast series is an audio archive of the field. It’s the giants who got things started for health literacy. I sometimes wonder about those who are now in school, beginning their careers, beginning their quest, how much they care about where we started.

That’s been a frustration of mine, honestly. Like, come on, you don’t know who this person is? Go listen to them. Like the Doaks. Even though they’re not around anymore, you get to hear their actual voices. Isn’t that cool?

It’s cool for me. But I don’t know whether it is for others. That’s why I’m giving this format a try. You are the perfect person to start this with. You’re the most forward-looking person in this conversation right now.

In 20 years, 10 years, five years, some interval of time, someone listens to this conversation right now, what would you like them to take from it?

Linda Ciavarelli: One, I would like for them to forgive us for what we don’t know. I do truly believe that that we’re on the cusp of a real sort of printing press moment in technology with AI. My hope is that someone coming back and listening can understand that the human piece of human interaction, specifically in healthcare but really in general, is incredibly important.

We can see that in our everyday lives, Helen. You can look on your device and see all kinds of things. But look up and you can see neighbors and people. The digital divide isn’t just what people have access to, but it’s also the divide that it creates. My hope is that when someone were to listen back to this, they can see us in this sort of pre-world, which it will be, they can say that they really valued the human connection.

Helen Osborne: Thank you so much. That’s beautiful. That human connection is almost like a thread. You talked about metaphors. You talked about keys. I see it almost like a thread.

The Doaks were in the very, very early stage. It wasn’t even quite called health literacy then. It was called literacy and health. When I got started, I wanted to learn more. I read their book. I followed them everywhere. I touted their wonderfulness. I met them at conferences. I’ve since helped build a repertoire of information and built on those practical how-to skills. For me, I feel that I’ve added the spoken word and the personal story.

I’m so glad that you and your future-oriented vision are thinking that people will still need that part. Yes, their technology might be different, even from what you’re doing now. It might be different, but we’re still people.

Linda, thank you so much for trying this out with me. I love this conversation. I hope our listeners did too. Thank you, Linda.

Linda Ciavarelli: Thank you so much, Helen. It’s been an honor to now twice be a guest. and I really hope you keep doing this format along with your interviews. I know this is the canon of knowledge. Remember, all these transcripts also build everything that everyone from now will know and will have access to. And that’s one thing really to think about. All these transcripts are available. This canon of knowledge will live on.

Helen Osborne: Wow, you’re giving me a lot to be thinking about for the future. It gets me excited, even though I get worried about it, too. But you’re right. There are almost 275 Health Literacy Out Loud transcripts out there to build on. Thank you, thank you, thank you. You’re awesome. Thanks, Linda.

Linda Ciavarelli: Thank you.

Helen Osborne: Wow. I learned so much from talking to Linda about where health literacy was, where it is now, and where we might go forward in the future. As she said, this podcast series includes a whole canon of knowledge that we can put into place for whatever part we play in patient education, health communication, and health literacy.

To learn more about health literacy and to access more than 275 podcast interviews, please go to www.healthliteracyoutloud.com. You can also find my recent interview with Linda there, too. I also invite listeners to share your views. Please email me about what you think of this new format. I don’t usually do experiments like this in front of everybody but sincerely want to know what you think about this effort to look back, look now, and look ahead.

Thank you, everyone. Together, we all make the difference. Until the next episode, I’m Helen Osborne.

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