The Public-Health Value of Speaking Plainly
By: The Atlantic
Tags: Health, Coronavirus, Public Health, Covid 19, Community Health

Conor Friedersdorf: Your last job at the CDC was as a global-health diplomat in the Caribbean. That sounds wonderful. Why did you leave, and how did you end up founding your own company?

Lisa Fitzpatrick: The more that I climbed the bureaucratic ladder, the more disconnected I felt from everyday people. So I moved to D.C. in 2007. I’ve interacted with thousands of community members over the last decade or so, just understanding what their challenges are, what their health and health-care concerns are.

Over the years, I became most passionate about community engagement and health literacy. I started Grapevine Health to improve health communication in Black and brown communities. We mostly do outreach physically on the ground with people, answering their questions. I started a video series called “Dr. Lisa on the Street,” focused on engaging people in conversations to connect them with health information, but also because I’m trying to build a brand around providing trusted health information that bridges the community back to the health system. I think the business model is payment from insurance companies, because they are required to engage their members. We’re trying to find proof-of-concept money so we can go to these health plans with data to say, ‘We can do engagement better than you can,’ meaning the health communication needed to keep people out of the emergency department and out of the hospital unnecessarily.

Friedersdorf: How does your outreach help prevent an emergency-room visit?

Fitzpatrick: We can do this by building trust and using smartphones to help scale our communications and support. In the case of a woman who had daily belly pain that wasn’t severe and had been there for a long time, she really just needed a pregnancy test. In another case, there was a woman who was crowd-sourcing health information about her rash on Facebook. I asked her to call me. We talked about the situation. In less than 10 minutes, I told her I probably knew what she had. I think she had a rash from perhaps a bug bite, or something overnight happened. So I told her to take Benadryl, mark the margins of her rash, then text me in 30 minutes. She texted, “Oh, I feel so much better, I’m going to take a nap now.” And she called back in an hour and said, “This is so great. I thank you for helping me because I was about to go to the emergency room, and it would have cost me over $150.” I said to her, “Do you think other people would like to have a service like this?” She absolutely did. These services exist; they just don’t exist for poor people.

Another use case is a gentleman who over two years only used the emergency department and never had a primary-care visit even though he had a doctor. So I took him to breakfast. We had a conversation about health care. And at the end, I said, “I would love to follow up and invite you to some of our events. Will it be okay if we send you a text?” He said, “Well, just call me on the phone. I want to talk to you.” And something about the way he said it helped me realize that this gentleman had a literacy problem. “So you have trouble with reading?” I said. And he said, “Yeah, I always have. I didn’t really go to school growing up.” You know, that was very humbling for me, but it made me realize how many people are falling through the cracks, because going to a primary-care visit can be very overwhelming for someone who cannot read, with all the paperwork and everything you have to do.

Friedersdorf: Is texting an important part of how you communicate with people in lower-income communities?

Fitzpatrick: I did a small research study with Commonwealth Fund when I first started Grapevine to understand the prevalence of cellphone ownership among Medicaid patients. We’re hearing a lot about the “digital divide,” but in health care, the digital divide is a different conversation than it is in education, because almost everybody I interacted with had a smartphone. So, the issue is digital literacy. Can we teach people how to better use their phone or to maximize use of the phone? And then how do we interact with them with the smartphone in the way they want to interact? This came up when I was practicing telemedicine over the summer. Even though people had video capability, a lot of them didn’t want to use it. So that creates a shift in your perspective about how we might deliver health care. There’s a tremendous opportunity to text, to educate, whether it’s pushing videos to help people understand whatever their health concern is, or maybe they want to escalate to a video visit. But I think text messaging is the least common denominator for the underserved, and we are severely underutilizing it.

Friedersdorf: After the pandemic hit, did you keep going out on the streets to solicit questions and see what’s confusing people?

Fitzpatrick: It’s still necessary. People are still out and about, and there’s so much distrust and confusion. So we partner with community-service organizations to do webinars, but we also do physical outreach. It’s been very discouraging to see people falling into traps of misinformation from social media — so people are asking me about drinking bleach, about the 5G towers and whether or not they were transmitting coronavirus. I have video footage of people not knowing the symptoms of coronavirus or how to describe or recognize their symptoms. And even now, just last week on a webinar, a woman said, ‘Well, why do I need to get vaccinated? My [COVID-19] test was negative.’ Even the accurate information out there is so often complex and probably overcommunicated. There are questions about the testing, antibody testing versus the nasal-swab testing and what that means. There are a lot of concerns about false negatives. Last week, there was a woman who said she kept going back to the hospital to be tested, but she didn’t have symptoms. “Why are you going?” I asked. And she said, “Because I work in a restaurant and I hang out with the same people. All of them had COVID except for me. It just didn’t make sense to me.” That led to a roundabout conversation about whether people can even believe in the testing.

The misinformation I’m hearing that concerns me the most right now is around this messenger RNA. I have been doing some research myself and planning to have a Facebook Live chat with the virologist Angela Rasmussen so that she can talk to people in plain language about what messenger RNA is and isn’t. You’ve probably seen some of these false videos going around scaring people, saying that it will alter your DNA permanently. Or that there’s a microchip inserted in the technology. But I find that once I explain the facts to people, especially if I tell them I’m in a coronavirus vaccine trial, they’ll listen to me in a different way. Especially people who’ve seen me out in the community before. So I think a lot of this can really be overcome with plain, authentic health information.

Friedersdorf: How is public-health communication falling short?

Fitzpatrick: When I address the public in plain speak, people might then assume that I can’t also have an academic conversation with Tony Fauci. I don’t appreciate that. As you move away from academia and into community-based work, it seems people devalue your experience because they’ve now placed you in a different bucket. I can handle that because I have great credentials. I know health care. And I am conversant across so many different languages in health care. But I think it’s demoralizing for young people in the field who are good at communicating with all kinds of different communities but want to be valued for their range of skills and experience.

We need to value communicating in plain language, in a way people understand. So my approach to this is to really break it down for people at the most basic level. Because I feel like we are not bringing people along with our sophisticated explanations. Television reporters want to talk to people in a scholarly way. They want scientific language delivered. That’s my impression from doing TV interviews. I want to spend time looking at video clips and dissecting the language public-health experts are using. Then taking those words out in the community to have conversations about them. This is something I really want to get on video. I think it would speak volumes about how much people don’t understand science and medicine and the way we’re communicating.

I’ve watched media clips of some health experts using terms that people don’t understand. For instance, I ask people, “Do you know what an antibody is? When we say ‘antibodies will protect you,’ do you know what that means?” Many do not. And those are very common terms used in the media. Even the word immunity: “Do you know what it means to be immune from something?” And they don’t know.

Friedersdorf: Say that a public-health expert goes on CNN. She wants to convey that scientists are still studying people who have recovered from COVID-19 to see what antibodies they have, whether those antibodies confer immunity, and how long that might last. What words should they be using?

Fitzpatrick: Well, instead of using the word antibody, I tell people I encounter that the body is naturally able to mount a defense to a foreign invader. I start there to help people even understand why we’re talking about this. And I explain what immunity means — that once your body sees a germ, it can recognize it in the future and that will protect you from getting sick again. The reason I talk about it that way is because this is what resonates in the communities I visit. We need to create a mechanism to communicate directly with the public in a trusted, credible way, but not at an academic level, without taking for granted what people do and don’t know. I am guilty of this as well. But I ask people if they understand what I say. And I’ll realize, Oh wow. Okay, bring it down one more notch, so that we’re not talking past people without even recognizing it.

Friedersdorf: I encountered you on the audio-chat app Clubhouse, in a room where several African Americans were talking about their reluctance to take a COVID vaccine because they mistrust the medical establishment and pharmaceutical companies. They mentioned the infamous Tuskegee experiment, where the federal government infected African American men with syphilis under the guise of giving them free health care and left it untreated to observe its course. Would you share how you respond to trust concerns rooted in historical injustice?

Fitzpatrick: I volunteered for a vaccine trial because I was doing outreach in the community one day and a guy said to me, “I’m not taking Trump’s vaccine.” That’s when I had to have the conversation about science and politics. Eventually I said, “Well, what would it take to get you to accept the vaccine?” And he said, “Well, if I could see some Black people associated with it.” I got a similar comment from a senior group I work with. And they were very distrustful because they’re sitting at home watching CNN and Fox News and MSNBC and they don’t really understand. As you might imagine, similar concerns come up all the time. In fact, I’m interviewing someone for my podcast tonight, a Black man with a Ph.D. who sent me a message saying he was in pain in an emergency room and they wouldn’t treat his pain because they thought he was drug-seeking. These are the kind of experiences a lot of poor people and a lot of Black and brown people have. They are disbelieved, they feel disrespected, and this makes people distrustful. On top of that, some don’t understand what the provider is saying. I had a gentleman in a homeless shelter tell me, “Those doctors use big words, and if I can’t understand what you’re saying, I can’t trust you.” It makes sense. I mean, that’s probably true for us too. So I really listen for the concerns and the question.

In the conversation when Tuskegee came up, my point was that the whole system has changed, including who is represented. It isn’t just that Black people are participating in the vaccine trial. We are also part of the leadership and are making key decisions and guiding the research development. So I may have mentioned Kizzmekia Corbett, who works for National Institutes of Health. She is one of the scientists who developed the vaccine for the Phase 1 trial for Moderna. And she’s a Black woman. And the safety monitoring and review boards include some Black scientists. The FDA has a committee that’s gonna review the data, and it has Black scientists on it. I just mention those things to give people some comfort in knowing that they are represented.

Friedersdorf: How do you answer concerns about the newness of the vaccine or unanticipated side effects?

Fitzpatrick: First I ask, “Well, how many of you are taking medication?” Most people I encounter are taking some kind of medication. I explain that this vaccine research goes through an approval process we are very well accustomed to. Your medication went through the exact same process. Because I first have to help people understand that you need to separate the science from the politics. Then I ask, “So what questions do you have about the research process for the coronavirus vaccine?” My job isn’t to tell people what to do; it’s to help them understand the information. And I share my own experience. For me, it has been very seamless. I had a clinic visit; they took gobs of blood to test for all sorts of things. I had a COVID test, and then they gave me an injection. The injections were one month apart. About 24 hours after the first one, I had a very sore arm and some achiness. And it lasted for about 12 hours, and then I was fine. And the second injection, some arm pain, a little bit of fatigue. Nothing beyond that. And when I tell people that, they’re surprised. And then they say, “Well, but you don’t know what’s going to happen.”

Friedersdorf: Like, years from now, some unexpected side effect?

Fitzpatrick: Yes. I’m honest with them: There’s nothing without any risk at all, but you could say the same thing for medications you’re taking. These medications all have potential side effects. So it is about risk assessment. Do you want to take the chance of being someone with a chronic health condition that gets COVID, or is there less risk in taking the vaccine that’s gone through this process and showing your body this germ so that you know you don’t get a severe case of this coronavirus infection? But these are conversations that we don’t have with people, because we live in sound bites.

I’m very down-to-earth and authentic about it because we in the health system have done such a terrible job connecting with people emotionally and understanding where they’re coming from. People come to us fearful or wanting peace of mind. It’s scary to think there’s something wrong with you. Nobody wants to interact with the health-care system. I see my job as making that a little bit easier and trying to bridge the relationship between the community and the health system.