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.

Like many of you listening to this podcast, I’m passionate about health literacy. It matters to me deeply both on a personal and professional level.

Karen Komondor is passionate about health literacy, too. She talks about the importance of knowing why health literacy is so important to each of us. In her experience, understanding this why can be a motivating force for taking action and a welcome support when dealing with inevitable obstacles and hurdles.

Karen’s passion for health literacy is ongoing. This includes sharing health literacy programs at an urban teaching hospital, leading health literacy training sessions and teaching about health literacy at a university level.

Karen also initiates and leads many local, regional and national health literacy collaborations. These include Healthy Cleveland’s Health Literacy Committee, Ohio Health Literacy Partners and the National Council to Improve Patient Safety through Health Literacy.

Welcome, Karen, to Health Literacy Out Loud.

Karen Komondor: Good morning, and thank you so much for having me today, Helen.

Helen Osborne: You talk about the why of health literacy. Why is that so important to each of us?

Karen Komondor: I firmly believe that it’s the why that can lead to resilience and commitment. You mentioned the driving force, and it certainly has been the driving force in my work.

Helen Osborne: Tell us more. Give an example.

Karen Komondor: I can tell you that personally, three of my four siblings were diagnosed with a chronic debilitating disease when they hit their 30s. They were already established in their careers and their education.

With this disease, there were numerous hospitalizations and office visits through the years. Helen, almost each and every time, I thought to myself, “Thank goodness I’m a nurse. What do other people do?” That is the core of my why.

Helen Osborne: The core of your why is your ill family members. I hope they’re doing okay.

But also, what you bring to this is your knowledge and experience as a nurse, as a health professional. I’ve dealt with that, too, and sometimes I wonder, “How can people without a health professional nearby like that make it through what they’re doing?” That’s more on a personal level.

Karen Komondor: Absolutely, and that’s what I try to keep in mind with any situation I’m in on the clinical level. I need to be that advocate for everybody. As well as the main projects I do, it’s the little day-to-day experience I go through addressing health literacy in the moments.

Helen Osborne: That’s what I wanted to get to. You have this on a very personal level. It’s not going to go away. I don’t know what your job was as a nurse before all this family experience, but somehow you linked your personal experience to what you did professionally.

Can you tell us how that link started working? What was the connection there, that evolution of your work in health literacy?

Karen Komondor: My background in nursing was trauma/critical care, and then I evolved into staff and patient education. It was back in 2007 where I started my health literacy work based off a grant that our adult learning center in the city received from a foundation in the city. They asked to work with our organization to work on writing documents in plain language. That was my introduction.

Helen Osborne: That was your introduction. It wasn’t exactly the kind of work that you were doing before that. Give us some examples of how that why sustained this work and helped lead to all these efforts that you have done since.

They’ve grown beyond writing some documents for this program. They’ve grown nationwide. How did that why make a difference as it grew and grew, your health literacy focus?

Karen Komondor: With my work in the organizational level, as the field of health literacy was evolving, so was the work that I envisioned we still needed to do.

But I think that to maintain that work and to maintain the resiliency and the commitment, I certainly had to collect stories as I went along. I have that core why in me, but there were more and more stories.

I think it was just by word-of-mouth that I was able to have the opportunity to start leading at a city level and just my passion for health literacy, recognizing that more and more needed to be done on a state level.

So many people, as I’ve discovered through my health literacy journey, are not even aware that there’s even an issue. Just maintaining my why and my passion keeps me going.

Helen Osborne: Karen, when I got started in health literacy, it was a few years before you did. I was working in a hospital, too. I was working as an occupational therapist. Immediately, that concept of health literacy got to me. I knew it was important, and I just knew that was what I wanted to focus on.

My organization then was not always supportive or interested. I hit many hurdles about it, and often I felt like I was the only one. I felt all alone in my passion about health literacy. That’s in the early days. My why sustained me, but in a limited way. I had to find another way to do my health literacy work.

It sounds like the good news story is you knew health literacy was important and you did something about it on great big levels, little levels and big levels. How has that why sustained you when not everybody was as receptive to the message?

Karen Komondor: There certainly have been obstacles along the way. This work is not easy, and that’s the main reason I believe that the why is important, because I have hit obstacles.

In my organization, we had change in leadership a couple of times, so I had to pause and primarily look at what was in my control and what was not in my control.

I often had to, when these obstacles arose, look at, “I’m hitting a brick wall now. What’s next? What can I do?”

Some of the obstacles were external. For example, “We don’t have the budget to do this,” for a major conference we want to host from our organization. What can I do? We can do a little workshop or lunch and learns. It’s all about pivoting and shifting.

Helen Osborne: Pivoting and shifting. You and I both have met a lot of folks doing this work who share our passion. Each one of us takes our own path to get there. What tips would you have?

I’m really interested in this pivoting and shifting. Tell us some stories about how we can proceed in that when things aren’t moving forward in very much of a planned pattern.

Karen Komondor: When I say pivot and shift, it means I may have an idea in my head how I think things want to move. If I come across a roadblock, I just have to shift my perception, but always keeping the main goal in mind.

What do I want to accomplish here? Maybe what I thought was the path isn’t necessarily the path.

What’s important to your next step is to brainstorm with others. That’s another tool that I found has worked very well with me.

Sometimes just working on my own positive mindset. When these roadblocks hit, I may have a lack of confidence or a fear of failure. There are all these internal obstacles as well as the external.

Helen Osborne: I’m curious about those. You talked about two very important recommendations there: to brainstorm with others, and I’m really curious about who you might include as those others, and then you’re talking about that internal work of changing our mindset and regaining our confidence.

For our listeners, be more specific about this. Maybe let’s start within ourselves. How do we regain that confidence and passion?

Karen Komondor: I think that is a personal journey for everyone. I think as humans we may all have certain insecurities, so it’s individual work.

Stepping back and looking within ourselves, going back to why I want to do this work, to stay committed and try to just shift from a negative mindset to a positive mindset. Instead of, “I can’t do this,” it’s, “What can I do?” Just getting a positive attitude within ourselves helps keep the motivation going.

Helen Osborne: Karen, I know that you had leadership roles within hospitals and other organizations. Are there organizational tools that can help that kind of a shift, too? You talked about lean or something. Is there a way to approach projects that can work that way and help you pivot and keep going on that journey?

Karen Komondor: Definitely, I would say, when we’re in our teamwork. At my organization, we did have a Health Literacy Institute made up of a team. I think that it’s all about being a good leader as well and encouraging the team to look at their whys and collaborate on different ways to move forward.

Helen Osborne: Kind of that group brainstorming there.

Karen Komondor: Yes. Also, look to other experts.

Helen Osborne: That’s what I was wondering about. Who else can you look to, to do this? Now you’re a leader, you want to keep things going and people are looking to you. Who do you look to, to get that support and direction to keep moving on?

Karen Komondor: There are so many people in our field that are passionate about this that have been doing the work, like you, Helen, for a very long time.

What I personally do is reach out to those in the field who have done things that I have not yet done. I reach out and say, “How did you get there? Please tell me the steps. What are your tips and tools?”

Really, it’s all about collaboration, not reinventing the wheel and sharing our resources. That’s been extremely helpful for me.

Helen Osborne: Karen, that’s exactly what you’re doing by talking about it on this podcast, is sharing those resources.

Listeners might be thinking, “That’s easy for them, but it’s not working out that way for me.” I don’t think people always talk about what’s hard. I so much appreciate you being upfront about that.

Karen Komondor: Yes, no problem. I’ll tell you I’ve had so many times where I’ve felt like, “I can’t do this. When is the next person going to step up and do this?”

I have had some pretty big roadblocks and I thought, “That’s the end of this project,” but then took the steps to turn it around and we just keep on moving forward.

Helen Osborne: We do, and it’s the why that keeps us going.

Karen Komondor: Absolutely.

Helen Osborne: You’ve been doing this health literacy work for quite a while, and so have I. Put on your future hat. Where do you see this going in a few years? What kind of a conversation will we be having about health literacy?

Karen Komondor: I’m hoping that within a few years we have increased the awareness out there. It’s really my professional mission to increase awareness that, first of all, health literacy is a problem.

One of the issues I’ll share is on our city committee, there were a couple of nurses that worked in large organizations completely frustrated because they could not get their work moving forward. They believed that if there was no mandate, then things just wouldn’t get done.

Because of that, there was a team and we ultimately wrote a proposal to the Joint Commission seeking to have health literacy be elevated to a National Patient Safety Goal.

Helen Osborne: Wow. I want to hear more about that. Our listeners can be from anywhere in the world. They may not all know about the Joint Commission. The Joint Commission is our body in the United States that certifies programs, right?

Karen Komondor: Correct. Certifies, let’s say, hospitals so that they continue functioning. The National Patient Safety Goals are those goals that every hospital has to address in order to maintain their accreditation.

I was able to recruit a team of about 18 health literacy experts from across the United States. Again, it’s reaching out, networking and collaborating. Spent about a year and a half writing the proposal, and that was right around the time of COVID. Our proposal was denied.

Right then, I thought, “That’s done.” That was the first thought. Second thought was, “We hit this roadblock. Now what do we do?”

Our work has continued. We decided we’re not giving up on this. We’re going to address some of the issues that they suggested we address. We continue to meet and work on this project.

Helen Osborne: This project is all about getting health literacy as a standard with the Joint Commission, being more specific.

Karen Komondor: Correct.

Helen Osborne: Wow. You tied this together with patient safety?

Karen Komondor: Yes, we did. There are so many stories out there, anecdotal stories, of patients who had near-death experiences because of errors in misunderstanding, really, doctor instructions.

I do have a personal story about that, if we have a moment.

Helen Osborne: Sure. Tell us that.

Karen Komondor: My mother-in-law, a very bright businesswoman, at the age of 75 underwent open-heart surgery. Afterwards, she developed an irregular heart rhythm, atrial fib, for which she was placed on the blood thinner Coumadin.

At her six-month check-up, she went to her doctor and he said to her that he wanted her to start on aspirin, and went on to explain that it had similar blood thinning qualities as Coumadin.

She misunderstood him and went home, stopped her Coumadin and started the aspirin. Within a week, she was in the intensive care unit on a ventilator with multiple blood clots. We almost lost her. That was simply due to miscommunication and not understanding.

Helen Osborne: Oh my goodness, Karen. Thank you for sharing that. I hope she’s doing okay.

Karen Komondor: She’s doing just fine.

Helen Osborne: Great. Wish her well.

What I take from this, from your story, you talked about someone on your committee who was frustrated and wasn’t supported about health literacy, and then you had your workarounds, like, “Get this through the accreditation body. Maybe they can help.” That’s a definite pivot that you did that way.

Then you tied it into bigger issues that we’re all concerned about, about patient safety and put that with health literacy. Then you brought it back to the why, that personal why.

Karen, these examples are terrific. Are there ways listeners can be learning more, let’s say, about this patient safety initiative, or any of the big projects you’re involved with?

Karen Komondor: I’m not sure if you can give my personal email. I am open to contact that way if anyone is interested in joining our efforts.

Helen Osborne: Great. We will have that on your Health Literacy Out Loud web page. For all listeners, go to the website and find that information. Sometimes the URLs are just too much to put on these podcasts. Go there. Some resources from Karen will be there.

Karen Komondor: I was just going to say one more thing about in a few years where we see ourselves. I also wanted to throw out there that we have a team in place right now that we have written a proposal to the Biden Administration . . .

Helen Osborne: President Biden.

Karen Komondor: . . . to recognize October nationally as Health Literacy Month.

I want to give a shout out to you, Helen, for starting Health Literacy Month. We’re hoping to elevate this because of your work to a national level by this October.

Helen Osborne: How exciting. Thank you. That gets to my story about my why and my early passion about it. I actually started Health Literacy Month because nobody ever heard of health literacy, or it seemed like nearly nobody.

I just thought, “What if we all speak about it at the same time.” Nothing special about October. We miscommunicate all year. But if we speak together at the same time, we’ll have a louder voice and people will pay attention. That includes policymakers and politicians, as well as people doing the everyday work.

That was a little mini story I have of taking my why to something that’s been going on for a long time.

Boy, it would be great if we have a national proclamation and people around the world are doing this, too.

Karen, you are terrific. Thank you for bringing your passion about health literacy, sharing the value of why health literacy matters to each of us and all those examples of how it can help us grow and create initiatives, as well as get through those tough times.

Thank you for being a guest on Health Literacy Out Loud.

Karen Komondor: Thanks so much for having me, Helen.

Helen Osborne: As we just heard from Karen Komondor, it’s important to appreciate why health literacy matters to each of us. That can help us build programs up and be resilient when things don’t go quite as planned. But it’s not always easy doing this work.

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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