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 product and host this podcast series, Health Literacy Out Loud.
Many of us communicate about science and health. We might be writing for a large national audience or speaking with local groups in our community. Regardless of its size, we need to communicate this information in ways that resonate with each audience.
I’ve long wondered how to do that, especially at those times when we are unlike those in our intended audience.
Happily, Dr. Lenora Johnson agreed to talk with me about a key concept necessary to accomplish this. That concept is about building trust with each audience.
Dr. Lenora Johnson directs the science policy, engagement, health education and public-facing communication initiatives of the National Heart, Lung and Blood Institute, or NHLBI, at the US National Institute of Health, or NIH.
This office supports and coordinates the public-facing messaging and information delivery channels on behalf of NHLBI.
One of the many projects that Lenora Johnson works with is CEAL, which is NIH’s Community Engagement Alliance.
Welcome, Lenora, to Health Literacy Out Loud.
Dr. Lenora Johnson: Hi, Helen. It’s a pleasure to be here. Thank you for inviting me, and I’m looking forward to speaking with you today.
Helen Osborne: Likewise. Let’s just cut to the chase. That word “trust,” what do you mean? I know it’s a key concept. What do you mean by that concept of building trust with our audience?
Dr. Lenora Johnson: It is a mainstay concept that we don’t necessarily think about when we first start to write, create or evolve messages. But it is central almost to the receipt of every message that we put out.
As I think about it, I think about some of the debates I had when I was a kid with my grandmother about whether something was true or not.
I would say to her often, “I don’t know. How do you know that?” If I said something counter to what she was saying, she would always respond, “I know what I know because I know what I know.”
I think that over time, what I realized was that she knew based on what she experienced and based on her lived experiences. I think truth in messaging and trust come from that place of the experience.
When we talk about trust and truth in messaging, people tend to believe or resonate with messages that come from individuals or sources who know what they know, who they trust, who have a shared experience with them in a way that enables them to trust that.
I think that’s central to a lot of the communication that we provide.
Helen Osborne: Lenora, I’ve known you, I’ve met you, so I feel very comfortable talking with you about this. It was way back when you were at the National Cancer Institute and I was doing some work with them.
I feel some shared experience with you. Our careers crossed paths a long time ago.
You talk about some important concepts both of trust and truth, and also our lived experiences. In my work these days, and I’m sure that your work at NIH, can be on a big scale. We might be communicating with the whole nation, if not the whole world. How do we build up trust when we don’t know each other like you and I know each other?
Dr. Lenora Johnson: It’s what you might call degrees of freedoms. You and I may know each other, or we may not. But if we go further enough down the road, I’m going to eventually run into somebody who knows somebody who knows you.
At least in the federal realm, what we realized is that we’re sitting in a place that is often seen as inaccessible, I guess, or unreachable or so far beyond the day-to-day communities where we’re trying to message.
For us, we evolve relationships with stakeholders and intermediaries who are more on the ground, more in the community. We begin to foster relationships of trust with them and those organizations.
Then we leverage the trust that they have with their communities to provide information that they can then share beyond themselves into the communities that they’re reaching, too.
Trust is distributed, I guess, in a way that you speak, connect and foster relationships with those that you trust, and then they in turn speak and connect in relationships with those that trust them.
Helen Osborne: That’s really helpful. Thank you. That answered a big question I’ve had when I work on big projects. How do I know how to reach everybody? I really like what you said about finding those connectors there to the community.
Many of the listeners and many of the projects I work on, sometimes we’re connecting or communicating with a much smaller audience. We may not be part of that intended group. We might be outsiders to that group, whether it’s a disease entity, an age or culture.
I guess there are two different ways when we are a part of that group, but my question often is when I’m not part of that group, how can I connect in a way that is meaningful and respectful, while also getting across that science and health information?
Dr. Lenora Johnson: It’s a great question, and one that I get. It’s not an uncommon question, I should say.
Particularly in health, there are many health-related issues that tend to be disproportionately represented amongst certain types of people or communities.
When we think about health disparities, for example, there are many Black and Brown communities that are disproportionately affected by a host of chronic conditions.
To your question, there are people who don’t come from those communities, don’t look like the individuals, but whose heart, work, passion and careers rest on being able to provide the information to those communities that’s needed.
I think when that happens, it’s almost like entering into a home. Entering into a community comes with humility. If you think of it that way, you can’t just run through the door and say, “Guess what I got for you? You need this. You need that.”
You have to find the right street, knock on the door and introduce yourself. If you’re in the South, you may have to sit on the porch and drink tea for a while.
There are customs, traditions and pathways to entering into a community, and sometimes that entering in takes a while. It takes time.
In the beginning of that entering in, you’re suspect. “What are you doing here? What do you want with me? What do you want me to do? Why are you coming to me?” It’s that kind of thing.
It’s not until you show a genuine interest or concern in what’s happening in those communities, in that neighborhood, that then you build trust enough to start to offer information, support or tools that can be helpful.
It’s enabling the community to work with you also and how to best do that. Invite someone to make an introduction for you, and that kind of thing.
The concept of entering in is critical when you’re not working within a community that you are used to or that’s part of your own lived experience.
Helen Osborne: Thank you so much. This really has been an ongoing question for me. Even when I started my health literacy work decades ago, somebody said to me, “How can you be doing this? You don’t know about my community. You haven’t lived this.” That question has haunted me and stayed with me for a while.
I can only bring my own lived experience of my own demographics. I appreciate the way you talk about earning that right and being caring. That is most sincere, the caring and commitment.
Can you translate your suggestions into a real example we could all hear about? How would that work when it comes to writing a booklet for a local community?
Dr. Lenora Johnson: I can translate because I’ve been there. I’ve always had, throughout my career, this desire or passion to make sure that, when we regard health information, you get the right information to the people who need it most, and you do so in a way that is acceptable.
In my profession, I’ve worked for entities from time to time that may not have had a lot of trust from the communities they were trying to reach, particularly academic or university settings.
Years ago, when I was working at . . . I won’t say the university, but I was working at an academic center and trying to reach populations that were disproportionately burdened by cancer in the D.C. area, which were Black communities.
I am Black, but that didn’t mean that I had carte blanche entre into a community coming from an academic institution that had little trust in that community.
Working with partners, we learned to understand that community first, learned to understand the operations, if you will, how information is shared, and then started to just volunteer, work and hang out.
We went to food shelters, participated in health fairs and began to visit, hang out and interact with the community until such time we were able to understand a little better, find out who the trusted voices were and then began to work with those individuals.
The key to that is sometimes your message that you’re presenting shifts as you go through that process. At least I learned that things are said differently, things are done differently and materials look different.
You learn a lot with regard to the way to present the information you have in a language, mode, format and style that is more accepting within the population that you’re trying to reach.
Helen Osborne: Lenora, you’re making me think of an example of work that I did back in my hospital days at a community hospital. I was doing health literacy work, and people would bring me their things to try to make them a little simpler.
One of the doctors was head of the emergency room, and he wanted to write a letter for all the patients essentially that said, “You came in to our emergency room, but it wasn’t really an emergency. Don’t do this again,” because the hospital wasn’t going to get paid for it.
I had to take that information and write it simpler. Yes, I can find shorter words, but I’m not the one who chooses to use that hospital’s emergency room.
I had a wonderful relationship with a workplace ed program for our employees that were learning English or going for their GED degree, their high school degree. I brought the letter to them, and I said, “Could you help me?” We worked through the letter in different ways.
I remember this one woman who looked at the letter with me said, “That could be me. I bring my child to this hospital’s emergency room because that’s what I do, and I don’t care if the hospital doesn’t get paid for it.”
Dr. Lenora Johnson: Absolutely.
Helen Osborne: It was her lived experience. It was not mine. He wanted me to come from this totally administrative perspective. That wasn’t her set of values and priorities.
I worked with that woman, and we indeed came up with this letter that resonated with the audience and was acceptable to this physician who might be a subject matter expert in what he wanted to cover about the emergency room.
I’m thinking that that might be equivalent to what you’re talking about. We had to earn the right and understand our audience.
Dr. Lenora Johnson: Exactly.
Helen Osborne: Do you ever get pushback, or did you ever get pushback, from those subject matter experts, like, “Why are you going to their health fairs?” or, “Why are you taking all the time to do this? Just do it. Just write it”?
Dr. Lenora Johnson: Yes. All the time.
Helen Osborne: Oh, you did?
Dr. Lenora Johnson: All the time. Not as much anymore because usually I’m in a better position to push that forward.
Helen Osborne: Lenora, our listeners to this podcast, they could be in community clinics, hospitals or public health institutions. They might be beginning their careers. They’re understanding why you need to build trust, but how can they gain the trust of those asking them to do this project?
Dr. Lenora Johnson: I think early on in my career, there were some investments, I’ll call it. If your career is going to be focused on reaching the not-yet-reached or not-well-reached, then there’s an investment that you have to make. That investment requires you to be present at times when the community is present.
Health fairs, church services, a host of things that are part of the everyday life of the communities you’re trying to reach. It’s important to be present in those.
Sometimes that being present takes you away from your free time. Sometimes it takes you away from your church to go to their church.
I think there are ways that you can invest in your career in the long term to develop that kind of presence in communities that you’re trying to reach.
When you do that, it makes it easier over time to make a difference in those communities, but easier also to get what we call a quick win.
If you’re working in a hospital and you need to make a win, you can have a better chance of making a win when people know who you are, they know where you come from and they begin to say, “So-and-so works there. Maybe I’ll go.” It’s that kind of investment, I think, that’s critical.
Helen Osborne: Then these strategies, they’d work regardless of whatever format we’re communicating in, whether it’s in print, a spoken presentation or even online?
Dr. Lenora Johnson: They do. There are those in the field that are responsible for, if you will, what’s on it, the words, what’s being conveyed, and then there are those in the field that are responsible for the delivery of it.
I think over time, those roles have changed to a certain degree. As you and I remember, there were times where the delivery was on a piece of paper, and we took that somewhere or printed it and had it delivered somewhere.
What we’ve found in the last two years because of the pandemic is what was old is new again, if you will. Meaning there were materials and products that had to be door-hangers or things on windshields because you had to reach people in any and every way you could.
Sometimes, in a number of places, that was either on someone’s door, a doorknocker, or just different ways of delivering content, basically, or information.
We were also trying to counter what was online. A lot of the digital information is so overwhelming and invisible. You don’t always know where it’s coming from or how it started.
What we’ve found is some of that “to your doorstep” or “on your windshield” has come back as ways of delivering trusted information.
The format may be different, but the elements of trust, listening and entering in are all the same.
You remember we used to, and we probably still do a little bit, do what we call trans-creation, not always translation. Sometimes whatever you’re evolving has to be remade based on how it’s received in the communities you go to.
Working with individuals to trans-create something, take the message and make it their own, I think is another important strategy and component.
Helen Osborne: Thank you. It sounds as though your work has been continuing. I know you’re very active with NIH’s Community Engagement Alliance, which is really doing this, whether we do it through door-hangers, online, community groups or great big messages from NIH.
It sounds as though our methods might have changed, but we still need to engage with our community, earn their trust and communicate about science and health in ways people can understand, will accept and can act on, which indeed gets us back to the core of what health literacy is all about.
Dr. Lenora Johnson: Absolutely. Sometimes the message isn’t even the same anymore when you hold true to those sorts of strategies.
I can give you a quick example. Early in the pandemic, and even still to a certain degree, there were times where we knew certain communities, Black and Brown communities, were hardest hit. We needed to get messages to those communities.
The reaction to those promotions was, “Why are you reaching out to our communities? Why do you want us to participate in the research? Why do you want us to take the vaccine?” It was basically the notion that, “Those of you that are developing cures, vaccines and therapies don’t look like us, who you want to use them.”
We stood up, and it took us off guard a little because there are many people of color who are, what we call, along the scientific pathway.
We did evolve rapidly along the scientific pathway and had voices from people of color along that pathway to speak to those communities particularly.
We had funders, researchers, clinicians, safety monitors that serve on IRBs, all of these people of color, whether they were African-Americans, Asian-Americans, Hispanics or Latinos, all participating along that pathway.
Their voices resonated. When you hear someone say, “Look, I am a researcher. I work in this lab. It was instrumental, and I trust this,” it has a different meaning coming from someone who, again, has that lived experience.
Helen Osborne: Lenora, thank you so much for sharing your lived experiences, too. Your voice really does resonate with me, and I hope it does, and I expect that it will, to all the diverse community of listeners who care about health literacy.
Thank you so much for all you do and sharing it with us on Health Literacy Out Loud.
Dr. Lenora Johnson: My pleasure, Helen. Thank you so much for having me. It was definitely a good experience to step away and have a conversation around something that we’re both passionate about. Thank you.
Helen Osborne: As we just heard from Dr. Lenora Johnson, it’s important to communicate about science and health in ways that really and truly resonate with our intended audience. But doing so 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 firstname.lastname@example.org.
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.