Ep. 210: Making Health Information More Human

Trust is at the heart of health care, but misinformation and confusing health information can make it harder for people to know who and what to trust. Lisa Fitzpatrick, MD, MPH, MPA, Founder & CEO, Grapevine Health, explores how plain language, trusted sources and genuine human connection can make health information more accessible and use it to help rebuild trust. 

Watch the episode on YouTube.

Featuring:

Lisa Fitzpatrick, MD, MPH, MPA, Founder, Grapevine Health

Host/Producer: Carol Vassar

Views expressed by guests do not necessarily reflect the views of the host or management. 

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Transcript

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Announcer (00:00):

Welcome to Well Beyond Medicine, the world's top-ranked children's health podcast produced by Nemours Children's Health. Subscribe on any platform at nemourswellbeyond.org or find us on YouTube.

Carol Vassar, podcast host/co-producer (00:12):

Each week, we'll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor's office. I'm your host, Carol Vassar. And now that you're here, let's go.

MUSIC (00:30):

Let's go Well Beyond Medicine.

Carol Vassar, podcast host/co-producer (00:36):

Today's guest is taking health literacy to the streets, and she's doing that in a very concrete and literal way. She's armed with not just her compassion and clarity as an MD, but also with a camera. Dr. Lisa Fitzpatrick is an infectious disease physician, a public health expert, and she is the founder of Grapevine Health, which we're going to talk all about today, that specializes in debunking health misinformation by doing exactly that, heading into the community, answering real health questions from real people, questions that often go unspoken, even in the doctor's office and amongst family and friends. And for Dr. Lisa, if I may call you that, there is no topic that is off limits. Dr. Lisa, welcome to the podcast.

Dr. Lisa Fitzpatrick, Grapevine Health (01:22):

Hi. Thanks for having me, Carol.

Carol Vassar, podcast host/co-producer (01:25):

So I'm wondering, what inspired all of this? Why did you decide to take your many years of expertise in public health as an MD into the community, into the streets with a camera to create what would ultimately become Grapevine Health?

Dr. Lisa Fitzpatrick, Grapevine Health (01:45):

I think there's a lot of distrust of the healthcare system, and even of physicians like myself, because we don't speak in plain language. And I've had someone actually tell me that, "I don't trust doctors because I don't understand them. They use big words and they try to confuse you." So that's the perception people have about a lot of their healthcare experiences because it's just too complex.

(02:09):

So after hearing this, I've been in the community a lot, going to church events or community health fairs. I've done some door to door work. I've also done some home visits. And just these conversations are really instructive and humbling, and the essence of them usually boil down to, "If I understood this better, then I would feel better, I would trust you more, and maybe I would make a different health decision." So I started Grapevine Health after creating Dr. Lisa on the Street, which was inspired, actually, by Jay Leno Jay Walking.

Carol Vassar, podcast host/co-producer (02:48):

Really?

Dr. Lisa Fitzpatrick, Grapevine Health (02:49):

If you can go out, have a humorous conversation with someone, maybe people can learn things in the process. And people like to learn from each other's experiences. So I hired a videographer and we went out, this is many years ago now, we went out into the community and just started asking people questions about health. And I learned something, they learned something, and it was a bit of a hit. But we didn't pursue Dr. Lisa on the Street in the way we're pursuing Grapevine Health, but that was the kernel that got Grapevine started.

Carol Vassar, podcast host/co-producer (03:22):

It sounds like we're missing something in traditional health communication, which I've been in for a very long time, and what I'm hearing from you is that we're not reaching the people that we're intending to help. How can we change that? And should we be using some of the principles you've incorporated with Grapevine Health?

Dr. Lisa Fitzpatrick, Grapevine Health (03:41):

Absolutely. I think we don't train physicians, nurses, allied health professionals in general, we don't train them to prioritize communication in plain language, and we take for granted that people understand what we're saying. A lot of the terms we use are very familiar, they're around, people can google things now. And I just think it hasn't been a priority. So that's number one. Also, people have healthcare providers and in many cases still don't trust them because of this communication gap, and I'll give you two examples, one from my family, and then one that provided an impetus to start Grapevine.

(04:25):

I was at a community meeting on a panel, and after I came off the stage, there was a line of people waiting to talk to me. And this gentleman, a middle-aged man came up and said, "How does someone like me access someone like you on a regular basis?" So this gentleman had a doctor, he was taking medications for chronic health conditions, but he still felt like he needed a translator, someone to really help him understand it, to build his trust. The second story is in my own family. I was with a family member at the hospital during a hospitalization, and after the doctor left the room, I said, "Okay. So what's the plan?" And he said, "Well, I was hoping you could translate. I didn't really catch anything he said." So the doctor has been and gone from the room, and the patient, my family member has no idea what the doctor said or what his next step should be. So I think this is a crisis.

Carol Vassar, podcast host/co-producer (05:28):

And not everyone has a doctor in the family like yourself that they can bring into the exam room or bring into the emergency room to make that translation for them.

Dr. Lisa Fitzpatrick, Grapevine Health (05:38):

Yeah. But I think it's overlooked. I think it's overlooked in healthcare as a driver of distrust, as a driver of poor health outcomes, a driver of accelerating costs in healthcare, because people avoid the healthcare system. Like the gentleman said, "I don't trust you if I don't know what you're saying." It's like someone coming up to me and speaking to me in Greek, and then expecting me to respond or to trust them. So I think it creates a disconnect between the community, our patients, and the work we do, and ourselves when we're not mindful about the impact of our language.

Carol Vassar, podcast host/co-producer (06:16):

And not everyone has a primary care physician to start with that kind of relationship one-on-one that is extended over a long period of time. They may be seeing multiple doctors, may be going to multiple emergency room visits rather than primary care. And would you think that exacerbates this kind of issue of mistrust?

Dr. Lisa Fitzpatrick, Grapevine Health (06:36):

I do, because the communication is so complicated and disaggregated, fragmented. If you have multiple doctors and those doctors or providers aren't talking to each other, that can create some redundancies, it can create mistakes. And who's going to suffer? It's the patient.

Carol Vassar, podcast host/co-producer (06:59):

Exactly.

Dr. Lisa Fitzpatrick, Grapevine Health (06:59):

Unbeknownst to us because we're not communicating. So I think health systems in particular really need to take this seriously, prioritize it, really do some program and process evaluation around this, particularly for people who have complex medical needs, are seeing different parts of the healthcare system that are not connected. I think the EHR is great, but does it have all the pieces connected for the person who picks it up and says, "Okay. I'm doing a new consult." Can they see all the historical information in the right place? So I think there's still a lot of work health systems in particular have to do to make this easier for patients, because we tell them, "Go to the portal."

Carol Vassar, podcast host/co-producer (07:45):

Right.

Dr. Lisa Fitzpatrick, Grapevine Health (07:45):

But I don't know if the people who administer these portals know how difficult it is for people to actually find things in their portal.

Carol Vassar, podcast host/co-producer (07:52):

Your approach to patient trust is very interesting. How did that get shaped? And I'm curious if maybe your experience growing up helped to shape that view on patient trust.

Dr. Lisa Fitzpatrick, Grapevine Health (08:06):

Not really. It wasn't something I was intentional about. I just noticed it after talking to dozens and dozens of people, and my own patients, people referred to me who didn't know why they were referred or couldn't tell me very much about their history, and it just came from curiosity. Going into the community, going to these meetings, participating in events that doctors might not normally participate in, like food delivery.

(08:40):

When I was at DC Medicaid, I was the medical director, and I did a ride-along with the fire EMS folks. So I rode on the ambulance, just so that I can get an understanding. And it just gives you a lot of information about what... We don't want people calling unnecessarily, but then when you talk to them, or you listen to their story, it starts to make sense. It does stem from people not really knowing what to do, who to call, or who to trust. So it's just such a prevalent issue, but I think people dismiss trust because we can't really measure it or our systems don't really measure it. It's this nameless, invisible thread, right?

Carol Vassar, podcast host/co-producer (09:33):

But it's an important one.

Dr. Lisa Fitzpatrick, Grapevine Health (09:35):

It is an important one, but I think the reason it's really hard for us to give it the credibility it deserves is because it's not a tangible thing. Although I like to tell people, I believe there are measures of trust. I think avoidable emergency room use is a measure of trust. I think medication non-adherence is a measure of trust. I think no-show clinic visit rates are a measure of trust, because trust also means I don't see the value to me. What are you bringing to the table, so I'm prioritizing my time in these other ways? So it's not a unidimensional issue; trust has layers and levels to it. But it's easily dismissed because, well, it's that thing over there, I know it's there, but I can't quantify it, I can't measure it, and so-

Carol Vassar, podcast host/co-producer (10:35):

You know it when you see it.

Dr. Lisa Fitzpatrick, Grapevine Health (10:38):

You know it when you see it. And I've asked people, "How do you decide you trust your doctor?" And even their answers most of the time are very nebulous: "I just get a sense about the doctor." Or the most concrete thing I've heard was, "Is the doctor listening? How much is the person looking at me?" It's those nonverbal clues or cues people are getting to decide: is this a trustworthy person? But a lot of it comes down to people's gut.

Carol Vassar, podcast host/co-producer (11:11):

Yeah. As you mentioned, it's not really all that measurable. Now, if we look at your YouTube channel, you're talking about everything. You're talking about vaccine myths, vaccine hesitancy, STD facts, and everything in between. I'm wondering, what are some of the most surprising health myths that you have encountered when you were out on the street, or even now, as you're creating this channel, that's hopefully going to make a dent in misinformation and get good information out there?

Dr. Lisa Fitzpatrick, Grapevine Health (11:44):

So most of our work is with payers and a couple of health systems we've worked with, to make content for them to deliver to their patients. But I think bringing up the YouTube channel is important, because we have to figure out how to get these messages out. I think it's a big challenge across the health system, how you actually deploy information that actually gets to millions and millions of people, and it's not an easy thing to do. But to answer your question about some of the surprising things, there are quite a few. I'll give you some examples. People are really confused about cancer.

Carol Vassar, podcast host/co-producer (12:31):

Oh.

Dr. Lisa Fitzpatrick, Grapevine Health (12:31):

What cancer is, whether or not it's contagious. I heard this on the street: someone believing that cancer was contagious. The treatment for cancer. And chemotherapy is a very powerful treatment, that, in essence, as people say, it kills everything in your body; this is how it is perceived in the community. Essentially, that's what it's doing to certain parts of your body. So trying to help people understand chemotherapy has been really challenging. Luckily, we have an oncologist on our speaker bureau who can help demystify some of this.

(13:24):

The reason we're called Grapevine is because people are getting health information from each other, from people they know and trust, and when the messages get garbled... For example, what is chemotherapy? Does it work? I had someone very recently, two weeks ago, tell me chemotherapy doesn't work in Black people, and again, this is the Grapevine at work here. So people are communicating their understanding about things, and it's like the game of telephone. Once the message gets transmitted to the next four or five, 10, 100 people, the message is so garbled, it doesn't resemble anything that's close to true. And so I think there are concerns that there aren't enough people of color in clinical trials, and when people hear that, they think, well, how do they know it works in us? And so that morphs into chemotherapy doesn't work in Black people.

(14:27):

I think there's also a lot of confusion about just the basics of chronic diseases, like heart disease, diabetes, what these conditions are, how they show up. And I think this is why it's so important for us to try and find relatable ways to communicate this information, because it's too overwhelmingly complex for people to try to go on... Now, people go to ChatGPT, which I think the AI tools are getting pretty sophisticated at breaking down complex information. But they still need a trusted messenger to help them determine, okay, which parts of this information do I need, apply to me? What can I use to help myself? So it's an interesting time to be focused on health communication, because I think AI...it's going to be a game-changer in some ways, and a game-changer because now you can go to ChatGPT or Claude or some of these other tools to get your questions answered.

(15:42):

Someone told me,  recently, that she went into a relative's health portal and downloaded or took a picture of the lab results, and then she put the picture into ChatGPT, and she thought it was pretty good at explaining what the labs meant. We didn't have that before.

Carol Vassar, podcast host/co-producer (16:07):

I've heard a lot of people doing that, yeah.

Dr. Lisa Fitzpatrick, Grapevine Health (16:09):

Right. We didn't have that before. So I think that's why it's a game-changer, because now the importance around health information to me will be having someone, because as we know, these tools aren't perfect, and they also don't always have the context. So you need a human in the mix to help people understand, okay, well, how does this apply to you? How do I make this more relatable or tailored to you? But who knows? Over time, it may get good at that as well. So that's why I say it's a game-changer. But we're not there yet, but I don't know that it's too far off. So we're thinking about this at Grapevine and what it means for us. But we are using AI now to try to help with some of our content.

Carol Vassar, podcast host/co-producer (17:03):

Things are moving so quickly because of AI, and I think it's going to look so different in a year, five years, 10 years than it does now. I'm wondering, let's bring in the younger generations who are learning some of their facts from TikTok, or not learning some of their facts on TikTok and it might not be accurate information. How do you see the best way and how do you think Grapevine can reach them with good, valid information for their health?

Dr. Lisa Fitzpatrick, Grapevine Health (17:34):

Yeah. Again, I think this comes down to trust. I mean, the digital natives, the people who grew up only with technology, they think about this in a very different way. My concern is the tendency to believe things you see at face value without really thinking, well, is this really true? Why is this true? What may or may not be true about this? I'm not encountering a lot of young people who have that level of interrogation when it comes to things they find online. And I think that is a role Grapevine can play to help people understand the information they're getting, how to help make decisions about what's right for them.

(18:22):

But yeah, we actually haven't focused our business very much on the under-25 population. We mostly focus on people who already have chronic health conditions. But it's really, I truly believe in prevention, and I think it's that younger generation that could actually move us toward prioritization of wellness and prevention, because if we can prevent disease, imagine what the world might look like, and our healthcare system.

Carol Vassar, podcast host/co-producer (18:57):

That's exactly what we believe at Nemours, whole children, whole child health. If we can start young, keep them healthy, prevent chronic disease, there's going to be a tremendous impact on them as adults. I'm wondering, as we're talking about trust, as we're talking about reaching all people really, if we look at larger institutions, hospitals, healthcare systems, public health agencies, how can they better engender trust within all of the communities they serve? It sounds like it's got to be a multipronged, multifaceted approach, from what you've said earlier.

Dr. Lisa Fitzpatrick, Grapevine Health (19:33):

Absolutely. But it's such a big question for big organizations. But if I had to pick one thing they could start with, it would be to talk to the people who work inside those organizations. I'm talking about the people who are in food service, who are in environmental service, who are in transportation. A lot of these folks, they have much more in common with some of the people we serve in health systems. They understand them socially, culturally, and it is an accessible repository of information. But a lot of times, we don't think about bringing them into the solution, or even listening to them and asking them, "Well, how do you think we can improve?" Even something like communication, like, "What are some things we can do to build trust with our patient population based on what you see in your job?"

(20:35):

A good example of this is, I mentioned my relative being in the hospital. Every day, the woman who brought his food from the cafeteria greeted him and sometimes had a conversation. So imagine what she might've taken away from that conversation. I mean, they're not talking about the medical issues or things like that, but they make observations. No one ever asks them, "Well, what have you observed in passing thousands of trays in our health system?" And the same thing for people in transportation, people who come and clean up the rooms. What are they hearing? What are they noticing? This is all valuable qualitative information that I think is untapped and overlooked, and I think it would be a great place for C-suites to start, to just get some intelligence about what's going wrong and what's going right inside the health system.

Carol Vassar, podcast host/co-producer (21:33):

C-suites, and also people who are in positions of communications, your marketing teams, your communication teams-

Dr. Lisa Fitzpatrick, Grapevine Health (21:40):

True, yeah.

Carol Vassar, podcast host/co-producer (21:41):

...to know what's going on within your world, but also in the greater world represented by the folks you're speaking with. I worked in communications for many years in a hospital system, never even thought of that, and I think that's genius.

Dr. Lisa Fitzpatrick, Grapevine Health (21:53):

Well, you have to be willing to listen, right?

Carol Vassar, podcast host/co-producer (21:56):

Exactly.

Dr. Lisa Fitzpatrick, Grapevine Health (21:57):

And solicit input, because sometimes... And I've had a C-suite person tell me, "Well, we don't want to ask, because then we might have to act on the information we get." That's basically what he said.

Carol Vassar, podcast host/co-producer (22:09):

Yes. Anything we haven't talked about that you'd like to share, Dr. Fitzpatrick?

Dr. Lisa Fitzpatrick, Grapevine Health (22:13):

I'd like to share this story. I talked a lot about trust, and I'd like to share this story. I call it the banana story with people, because it was a moment of humility for me, and I want people to think about their own perspectives on trust and how we build trust in the community.

(22:33):

So one day, I was out in the community, and there was a woman walking by, back and forth. She wasn't engaging, but she was looking to see what was happening. And then, after a few minutes, she disappeared, and the next time I saw her, she was walking toward me with two bananas, one of which she was eating, and she walked over and gave me the other one. And she said, "I bought this for you." And I was so touched. I put it in my pocket. And she said, "No, I want you to eat it." And I said, "Well, I'm kind of busy. I'll eat it later. But it's the perfect banana; it doesn't have any spots. I love this kind of banana." She says, "No, I want to watch you eat it." And I said, "Well, tell me why it's so important to you that I eat this banana, and I'll take a bite." And she said, "I want to see if you trust us."

Carol Vassar, podcast host/co-producer (23:28):

Ooh.

Dr. Lisa Fitzpatrick, Grapevine Health (23:29):

Yeah. So it kind of blew my mind, because here I am thinking I'm demonstrating how trustworthy I am, I'm showing up in this community, I'm engaging. And she's thinking, well, if you trust me... Why should I trust you if you don't trust me? Are you seeing and treating me as an equal? Is there a hierarchy here or not? Is this a human-to-human interaction? And I always forget to tell people, "Yes, I ate the banana. It was delicious." I didn't feel she meant me harm at all. But when I tell this story, people's knee-jerk response is, "Well, what's in the banana? What's she doing?" It never occurred to me that she meant me harm. And I think that knee-jerk response is also a reason for us to introspectively review what is going on that creates this immediate perception that this woman means me harm when she's really just trying to have a human interaction?

Carol Vassar, podcast host/co-producer (24:34):

Dr. Lisa Fitzpatrick is an infectious disease physician, a public health expert, and the founder of Grapevine Health. 

MUSIC

Well Beyond Medicine

Carol Vassar, podcast host/co-producer

Thanks to Dr. Fitzpatrick for joining us to talk about one of the foundational elements of health and healthcare: trust, as strengthened by open communication, mutual respect, and reliable, evidence-based scientific information. And thanks to you for listening. 

Looking for trusted health information focusing on what happens outside the doctor’s office that affects a child’s health? Look no further than the conversations convened here on the Nemours Well Beyond Medicine podcast, available wherever you find your favorite podcasts, the Nemours YouTube Channel, and at nemourswellbeyond.org. Subscribe to our monthly e-newsletter there for a recap of our most recent conversations, and leave us a review or episode idea. That’s nemourswellbeyond.org. 

Our production team this week includes Susan Masucci, Cheryl Munn, Lauren Teta, and Alex Wall. Video production by SarahKate Reger. Audio editing and production by me. Next time, we’ll get an update on ongoing pediatric cancer research at Nemours and beyond, and hear the remarkable real-life story of one teenage cancer patient whose treatment—and future—have been made possible, in part, by decades of similar research and the resulting medical treatments available today. Please join us. 

I’m Carol Vassar. Until next time, remember that together, we can change children’s health for good - well beyond medicine.