8. Medical Jargon is Killing Us

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Medical jargon is a thing of the past and health literacy is now en vogue – and can actually save patients’ lives according to our guest, Dr. Lisa Fitzpatrick. We’re also joined by Dr. Venice Haynes and Natalie Davis who talk to us about the anxiety, confusion, and fears people across the country have about asking those life-saving health care questions and booking a doctor’s appointment in the first place.

 

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Transcript

SPEAKERS

Dr. Lisa Fitzpatrick, Natalie Davis, David Smith, Venice Haynes

David Smith  00:00

Hey listeners, the COST OF CARE is a 10-part series. We think it’ll make more sense if you start from episode one. So go back, start there. And we’ll be here when you’re ready.

Dr. Lisa Fitzpatrick 

We have the highest rates of disease now that we’ve seen in a very long time and I think it’s because people are confused about some of the health information.

David Smith

That’s Dr. Lisa Fitzpatrick speaking as part of her YouTube series, Dr. Lisa On The Street.

David Smith 

All of this sounds very relevant, and timely, this video was actually recorded seven years ago, back then she was just asking questions about the flu and decided to go out and talk to folks on the streets of Washington, DC where she lives.

Dr. Lisa Fitzpatrick

They’re not sure what they should do, what they should avoid, what activities to engage in. And I want to help demystify that for people.

David Smith 

Dr. Lisa has been at the forefront of meeting people where they are and explaining complicated health topics and approachable ways. She’s on a mission to make sure everyone can actually understand what their doctors are talking about. I’m not a me, I haven’t went to school to be a doctor. I haven’t went to school to be a nurse. Today on the show, we’ll talk with Dr. Lisa, as well as two experts from United States of Care who are on the ground listening to what everyday people actually want out of their healthcare system. Because despite all of our political divisions, it turns out that when it comes to our health, we’ll have a lot more in common than we might think. This is the COST OF CARE. I’m your host, David Smith.

David Smith  02:35

Dr. Lisa Fitzpatrick is a super impressive person. She’s a medical doctor who began her public health career in 1998. As an epidemiologist at the CDC, she served as the medical director for Washington VCs Medicaid program, and she’s the co-founder and CEO of Grapevine Health.

Dr. Lisa Fitzpatrick 

The name comes from hearing people, my patients included, tell me they trust health information from their friends and family or they get their health information through the grapevine. And I saw this as an opportunity to support the information on the grapevine because as you know, and as we’re seeing now, a lot of the information on the grapevine is incorrect, misinformation, lots of conflicting information that confuses people.

Dr. Lisa Fitzpatrick

And so we wanted to step into that space to help make health information more relatable, trusted, and relevant for the communities we’re serving. I realize we are not doing a good job, communicating effectively with people helping them understand how to use health information, or how to navigate the healthcare system.

David Smith 

Tell me about Dr. Lisa On The Street. That series, what is that?

Dr. Lisa Fitzpatrick 

Dr. Lisa On The Street is exactly as it sounds. I started it a few years ago. But there was deep passion in me to help people understand health information because of the kinds of questions I was getting, from my family from friends, even patients who had been referred to me and didn’t have a clue about the medicines they were on or anything about their health conditions. But I’ve been thinking about this for many years. When I was on CDC, I was pretty active in the community. And I was invited to a panel to speak on a panel for the community.

Dr. Lisa Fitzpatrick  04:27

And after it was over, a gentleman came up to me and he said “how does someone like me access someone like you on a regular basis?” And that just stuck with me. He felt I was relatable. I was explaining complex health information in a way he could understand. And I knew there must be millions of people out there like him. Because of my own experience with people saying I just came from the doctor. I have no idea what they said or seeing patients who are discharged from the hospital, and they can’t tell you what happened, why they were put on the place on the medicines they were prescribed and so on.

Dr. Lisa Fitzpatrick 

And so I realized this is not just a national problem, but probably a global problem. And I wanted to do something about it. And so since I was one person, I thought, well, how can I? How can I scale myself? How can I clone myself? And I thought, well, the best way to do that was to create a video product that I could put online, and then give people a way to contact me. So I found a videographer. And we just, were spontaneous about it.

Dr. Lisa Fitzpatrick

We went out onto the National Mall, where I missed the flu epidemic. And I had questions I wanted to ask people, what is the flu? How is this spread? How do you prevent the flu? Can you treat the flu? And I realized people very much wanted to engage in health-related conversations.

David Smith  06:12

What are some of the tactics or the communication tricks you employ when doing this work, when trying to communicate what can be really complicated information and distilling it in a way that everyday people can walk away from and really get something out of?

Dr. Lisa Fitzpatrick 

Well, I think the first thing is to be nonjudgmental. So to have a very accessible approach. And when I’m out on the street, sometimes I have on my white coat, and sometimes I don’t, but I generally have some sort of prop that attracts people to have a conversation with me.

Dr. Lisa Fitzpatrick 

So for instance, I have an organ model. When I have the organ model, I rarely have to invite anyone, they always come over to it. And do you know why? Because everybody has a body. And they don’t know what’s inside. They’ve never seen the organs. The organ model levels the playing field, and people have questions about what’s inside. I’ve had so many people say, all that of is inside of me? So it’s, you know, it’s really it’s a powerful interaction. So that, you know, sort of the secret sauce is, are you relatable, can you speak in plain speak?

Dr. Lisa Fitzpatrick

Because a lot of doctors especially think they can, but they can’t. We are so accustomed to talking to each other. This is a language for us. And we don’t really think about it. So when we are talking to people who are not from medical scientific research backgrounds, we forget that we have to make the language accessible. And a present-day example of this is our exercise we do on the street lately. Do you speak Coronavirus? We listened to the clips by the TV doctors and pull out the words we think people might have trouble with and we put them on a whiteboard. And invariably, most people can’t even describe or define any of those words.

David Smith  08:50

What has been some of the biggest insecurities, anxieties, uncertainties. You’ve heard from patients as they’ve interacted with you?

Dr. Lisa Fitzpatrick 

Yeah, I would say the most devastating one to me was one was a woman who patiently waited for me to finish talking to people and pulled me to the side and said, “I have asthma. And I’m hearing on the TV about the symptoms of COVID. I’m afraid I might have it. And if I find out I have it, then I can’t go to work and I have to go to work.” But she was really afraid because the symptoms of her asthma were difficult for her to differentiate from the COVID symptoms. So she wanted me to help her understand, should I get a test? Where do I go get a test? What do I do if I’m positive?

Dr. Lisa Fitzpatrick 

And these are real concerns. And she didn’t know who else to ask. So here I am a stranger on the street. So she pulled me to the side and asked me. Similarly, a gentleman who pulled me to the side and whispered in my ear, my doctor told me I have hepatitis. What does that mean? And can I get treatment? I was devastated by that, especially as an infectious diseases doctor, how can someone be given such a diagnosis of a treatable condition? And not understand it and not know what, how did the system fail him so badly?

Dr. Lisa Fitzpatrick  10:24

So lots of situations like that, but there are also fun moments. There’s a video with me talking to people about diabetes. And a guy comes out and he’s very proud of himself. Because he knows all the answers. He says, “well, I’m diabetic.” And I said, well, you’re diabetic. Let’s see, can we look in your grocery bag? And we both laughed it off. But we had a moment. And it was an opportunity for us just to have a conversation about how to think about food and we need more of that. And people reinforce or validate the need for healthcare providers to speak in plain speak so that people can really understand what’s going on, especially now it’s a scary time for all of us. And if we’re not communicating effectively, this is what leads to misinformation.

David Smith 

So I want to dig into this point on misinformation, because it’s so important right now, we all know that social media can be this breeding ground for misinformation. But why do people feel the need to turn to places like Facebook and TikTok for health information in the first place? I think a lot of it has to do with what Dr. Lisa’s talking about. Those sources feel more accessible and relatable. Like, just think about it.

David Smith 

If people have to choose between reading a dense medical journal, or a social media post written in plain speak, that’s shared by a friend, Which do you think is going to feel more welcoming, understandable and trustworthy? So how do we stem the tide of misinformation and encourage people to get their health information for medical professionals? Dr. Lisa thinks that change starts with doctors. More on that after the break.

David Smith  12:35

This inability to communicate in the ways you’ve described is that a function of a curriculum for clinicians that we’re not teaching them the right communication skills, is it a function that we don’t allow our clinicians to spend enough time with patients? Or is it the patient’s just don’t feel comfortable to be vulnerable? Or don’t have confidence?

Dr. Lisa Fitzpatrick

Well, the latter, I would never blame this on patients, I think we have a responsibility to communicate. It’s like me going into a bank and the teller is talking to me in Greek. That’s what it’s like. So it’s that tellers responsibility to speak to me in a language so that we can have a conversation about me transacting at the bank. It’s the same thing. And with respect to the training, yes, I think we need to train the healthcare workforce, and the pipeline. So people who are students, trainees, interns, residents, but we forget we used to be people who didn’t know this language, either.

Dr. Lisa Fitzpatrick 

We used it to speak in plain speak until it was trained out of us as medical professionals. So we’re all capable of speaking in plain speak, it’s just that we spend so much of our time speaking to each other in medical jargon, research jargon, scientific jargon, it becomes second nature, it is our second language. And we forget because it’s much easier, you know, it takes it not only a skill, but it takes patience. To stop slow down, make sure people understand and if they don’t, try to find whether it’s a metaphor, or some more relatable way to explain the information, it takes a lot more time.

David Smith 

What Lisa is advocating for is all connected to a larger concept called health literacy. This is another term I’ve heard thrown around countless meetings and conferences. But during my conversation with Lisa, the definition I was used to essentially got flipped on its head. I’ll confess you have absolutely shifted my own paradigm. Just 180 degrees. Every time I’ve heard the term health literacy, like I think a lot of people in our industry, I tend to apply that to patients how health literate or illiterate as a patient. And how do we raise health literacy of patients, so they can engage differently.

David Smith 

And that’s what you’re saying is so profound to me, because that is the wrong metric, our ability to communicate with patients and meet them where they are, and have that human connection and be able to distill that complexity into something that can be grabbed on to and acted upon as a means of improving care. Hell, yes, I agree with that 100%. Now I feel like an idiot forever thinking health literacy was something different.

Dr. Lisa Fitzpatrick 

No, you’re not alone, right? You are, so many people are dismissive of this. I’ve had people say, well, they can just Google it, there’s information. It’s not just about information, like what happens, sure you need to give people information and ensure they can use it. But we don’t even get past the first step. And we have the priority, because there is a return-on-investment opportunity for addressing health literacy. And that’s a fact there are data to support that. But I think people just dismiss it as was just information, people can get that anywhere.

Dr. Lisa Fitzpatrick  16:27

I’ve had healthcare providers say, well, I don’t really have time, you know, there’s some and I know there are time demands on especially primary care providers, you don’t have a lot of time to see a person. So they say, well, we don’t really have time to answer all their questions, and they come in with their long list and I mean, there are ways to mitigate this and to address it. And I think I recommended teaching their staff because if you enable your staff to collect information, talk to patients gather the information, that there are other ways that might help mitigate some of this. I think we just have to be creative about it.

Dr. Lisa Fitzpatrick 

But I think we can’t use time as the reason we are meeting people’s health information needs, because if we don’t help them understand their health conditions, why would be we be surprised that they’re ending up in the emergency room or in the hospital? If we didn’t give them the information they needed to prevent that from happening? We have to recognize our own behavior, how are we discouraging people or, or even disrespecting them with our own behavior? And we’ve asked patients about this and community members. What makes you trust a doctor? Or why did you decide to find a new doctor or not go back there? The doctors make me feel rushed. They don’t listen to me. I can tell they’re not listening, their hands on the door. They’re trying to get out of the room.

Dr. Lisa Fitzpatrick  18:04

It’s like, I don’t want to ask my questions. Because I feel like I’m a burden. How are we making our patients feel like a burden when they are the reason we are there? So I think we have to do some self-assessments, to look at ourselves and figure out where the priorities should be because we don’t see people putting the patient at the center. If we did consistently, patients wouldn’t feel like they’re a burden, and they can’t answer questions.

David Smith 

To address this problem in her own work, Lisa’s going way beyond the usual easy solutions. And she knows her way is the hard way. I mean, here’s how she answered me when I asked how can we build a better system with higher health literacy?

Dr. Lisa Fitzpatrick 

You won’t like it.

David Smith 

I like everything you’ve said so far, Lisa, hit me.

Dr. Lisa Fitzpatrick 

Well, first, let me give you some context. So I’ve been thinking about these problems for a long time trying to figure out why we keep spending all this money, having all these meetings, conferences, policy conferences. It really upsets me how much money time, resources, we expend to address these problems that have been here for decades, and we’re really not getting that far. So I moved into the neighborhood, I’m serving. Because I thought okay, I need to get proximal, there’s something we’re missing. I want to see I can’t you know, my patients live in the you know, underserved community. I’ve been working in an underserved community, but that’s not the same as living here.

David Smith 

What Dr. Lisa sees day to day living in her community continues to shape her views.

Dr. Lisa Fitzpatrick 

What about the trauma that’s making people sick? Why are we talking about that as a social driver of poorer health outcomes because I think that’s an even more powerful driver, what we’re seeing with COVID-19 right now, people keep asking you and asking, this is a very common question. Why are Black people and Brown people suffering so much from COVID? disproportionally? So we talked about the obvious things like being frontline workers and having high background rates of chronic health conditions that place you at risk for COVID-19. But what about having consistent exposure to subtle traumas that you don’t think about and what is that doing to your immune system and your ability to fight off infections like Coronavirus?

Dr. Lisa Fitzpatrick  20:42

So, this, to me, is the insight. You add on top of the chronic trauma and stress, the health literacy challenges and the distrust. To me that’s a perfect storm for disengagement and poor health outcomes. We have to look at again, look at ourselves, and ask why. Why is the trust not there? Why are people so distrustful? And what can we do to address that? Do we even want to? And I’ll tell you another story. It’s my neighbor. And he knows I talked about him, I talk about him all the time, because he’s given me so much insight.

Dr. Lisa Fitzpatrick 

He’s out walking in the mornings. And I see him quite a bit, but I hadn’t seen him in quite a while. And I finally saw him and I said, well, where have you been? I haven’t seen you. He said, oh, I was in hospital. They told me I had a bad heart. But there’s nothing wrong with my heart. Look at me, I feel good. And I said, well, if there’s nothing wrong with your heart, why did you go to the hospital? And he said, well, I couldn’t breathe. And I said, well, did nobody explained to you why the breathing was related to your heart. He says, you know, those doctors, they just talked in those big words. So they can confuse you and give you all those pills so they can make money.

Dr. Lisa Fitzpatrick  22:17

So when that one conversation, like think about how many lessons I learned in that one conversation, the issues with distrust and why there’s distrust, how it appears to people, what we’re doing. The health literacy issues, him not understanding the connection between breathing and challenges with their heart and why nobody, why was he discharged from the hospital before he understood that? I think we have to be willing, like we have to accept that and own, that we are part of a system that continues to disenfranchise people and enable the disparities we’re seeing.

Dr. Lisa Fitzpatrick

We really have to be committed to addressing it. And so people like my neighbor, he just doesn’t trust the health care system period. But he’ll talk to me because I’m his neighbor. And I, you know, he says, I don’t believe your a doctor anyway. I said, why not? He said, well, you’re too nice. You talk to everybody. So what is that saying about us?

David Smith 

It’s a pretty damning indictment of our system that someone can’t reconcile Lisa’s kindness with her being a doctor. As medicine has become more and more of a business, we’ve drifted away from the simple goal of just helping people.

Dr. Lisa Fitzpatrick

You know, I say we’re in the peace of mind business. Peace of mind, because it’s scary to be sick or scary to think there’s something wrong with you. And I think that’s part of the reason people avoid care. Because they don’t want to hear bad news. And I had a man tell me that, too. When I asked him, Why haven’t you had a doctor’s visit in so long? He said, well, you know, when you go to the doctor, it’s kind of like going to the mechanic. You tell them, something’s wrong with my brakes. They say, well, you know your carburetors gone bad. That’s what the doctor is like. And we just don’t want to hear bad news.

David Smith  24:21

This is pretty relatable. And by the way, not the first time that our bodies have been compared to cars in this show. We all know this experience. You go to the mechanic for routine inspection, they walk out into the lobby, and they tell you Sorry, dude, looks like you’re going to need a bunch of pricey and unexpected repairs. It gets super frustrating and it makes you want to avoid going all together. But with cars, we’re required to get them inspected regularly. And that’s just not the case with our bodies. Even Dr. Lisa admits she can be hesitant when it comes to getting care.

Dr. Lisa Fitzpatrick 

You know, I’m a doctor, I understand how most of this works, and even delay care, because it’s just too inconvenient for me to figure out if there’s something wrong, right? So I think that’s where the nonjudgmental nature of this work has to come into play. It’s also where we need to train our healthcare workforce, not to judge people by their condition or by their social circumstances, because these are human issues that we’re struggling with on different levels.

David Smith 

After the break, we’ll zoom way out from Dr. Lisa’s work in our local community, and hear how these conversations are playing out for patients all over the country.

Natalie Davis 

You know, if you take a step back and think about health care, it’s not a political issue. It’s not a policy issue to people, it’s an everyday family issue. And for the most part, people don’t want to think about health care, they just want it to work.

David Smith  26:02

This is Natalie Davis, co-founder and acting executive director at United States of Care,

Natalie Davis 

Which is a nonpartisan nonprofit focused on increasing access to affordable health care for everyone. So spend my days going around, talking to everyday people, entrepreneurs, policymakers, advocates, all across the country to understand how the health care system is working for people, how it’s not, and how we can really take transformative steps to make a better healthcare system for our people.

David Smith 

Natalie works alongside Venice Haynes. Who we heard from back in Episode Six talking about social determinants

Venice Haynes 

We really like to think about a people centered approach, because it’s not a one size fits all healthcare impacts, you know, rural communities differently than it does, you know, urban communities and everything in between.

David Smith 

One of their key initiatives is called voices of real life. It’s a project that puts their people centered approach into action.

Natalie Davis  27:09

Voices of real life is a group of people who live ordinary and extraordinary lives just by virtue of being humans in this earth and really, you know, having their own unique experiences.

David Smith 

This is the kind of story you might hear in the voices of real-life video.

Natalie Davis 

And so the voices of real life are really people that we can go to and say, you know, tell us about your experience. Tell us about what’s not working, what is working. You know, one of our favorite questions is, if you had a magic wand and can make a healthcare system that works for you, what would it be? We invite them to roundtables and conferences and webinars that we host where they can really ground all the work that we do the change that we need in their day to day lives.

Venice Haynes  28:14

They just want to be heard. They want to be listened to, they want to be valued, not treated like a second-class citizen, not thrown through the system as just another number because people feel that, but just another number is a life. Right? It’s a brother, a sister, a community member and sometimes I feel like they have this sense of alienation.

David Smith

To work through that alienation. Venice calls on her 14 plus years of public health experience working with underserved communities.

Venice Haynes 

I approach it from I see you, I hear you, I want to hear you your story. Because your story is unique in some way. Your story is also very similar to others in some way. And so we’re listening for exactly that the similarities, because at the end of the day, on some level on the spectrum, we have probably have more in common than we care to think but how do we know unless we listen

David Smith 

Through their work with United States of Care, Natalie and Venice get to connect the dots between all these seemingly disparate stories. But for the individuals, the connections aren’t so clear.

Natalie Davis 

There is no sense of shared experience in healthcare. Everyone feels like they’re going through the healthcare system alone. And if they encounter any issues from picking a plan or finding a doctor or working through a hard situation with a physician that maybe isn’t respecting them, they feel like that is completely their fault. It is only to them. They are at this alone and that this must only happen to them. You know, when I call and say, Hey, I’d love to just talk to you about health care, I’d love to talk to you about your experiences.

Natalie Davis  30:08

People usually say I’d love to happy to tell you, Natalie. But you should know that I’m too rich, too poor, too smart, too stupid, too healthy or too unhealthy. And so my story’s my own, you won’t hear anything like it. And that they are happy to share. But there is in the sense of shared community, the shared experience, and then they tell me their story. And there is something very unique to it. But it is, it’s also the exact same story I hear every day where it isn’t, the system isn’t working for them.

David Smith 

We’ve gotten a taste of this, based on the stories that listeners have shared thus far, we’ve received countless voicemails and emails from people who know the system isn’t working, but also feel completely left out of the national conversation about health care. And so many people are just exhausted by all of it. Hell, I work in this industry, and I’m exhausted by it. And it turns out, this is something Natalie hears all the time.

Natalie Davis 

Underlying a lot of the conversations and the stories that we hear really is feelings of anxiety, confusion, desire to actually not talk about healthcare, to not talk about the system, and turn off from the kind of hyper politicized nature of our kind of national conversation on health care there, it feels like a political issue, because that’s what they people see in the media. But it isn’t when they think about getting their daughter health care when they think about bringing their mom to the dentist or to chemo to get in a bill that they don’t, you know, know what to do with. These experiences that people talk about are often tainted by negative feelings and emotions. And so, you know, as policymakers, we should think about when we create solutions that people’s first stances are kind of a negative one, when they think about health care.

David Smith  32:03

It’s negative, because we feel pushed around and taken for granted. But like madly said, healthcare has also turned into this complicated hot button political issue. Somewhere along the way, we stopped prioritizing what we all need to be healthy and productive people, and instead got mired in this endless ideological debate. United States of Care is trying to bring the conversation back to the things that people agree on.

Natalie Davis 

When we go out and talk to people, there are four things that have really risen to the top that we get the tip of care have taken on as our North Star goals. So across demographics, one, people want certainty they can afford their health care. Costs is the number one concern across the board, that won’t be a surprise to you or any of your listeners. And it’s a great mention, of course on this podcast, but it really is the day-to-day costs, you know, you have to pay this thing called a deductible even though you pay monthly for your health insurance. You don’t know when you come to the doctor’s office, if you’re going to have to pay something out of pocket or not, or why that would change to people, all the security and freedom that dependable healthcare coverage provides is life changes.

Natalie Davis 

So this means you have a baby, you are fired, you want to go start a new business, your coverage, your health insurance is there for you and you can use it, people are really concerned that the health care they have will disappear soon as they need it. So this feeling of this is not dependable. This is not something that’s here for me. You know, the pandemic is a great example of that people lost their job and they lost their health insurance during a health pandemic. This is, you know, people see that and it does not feel good, it does not give them trust in our system.

Natalie Davis

And you know, if we think about as policymakers and solution makers, this is another thing we should understand is when we come up with solutions, people know that the system is kind of opaque and works in weird ways. And so if we talk about solutions, there’s a big hesitancy to believe that they’ll actually make an impact. Three, people can get personalized care that they need, when and how they need it. This is about choice. This is about I know what I need.

Natalie Davis  34:19

And four, people experience a healthcare system that’s understandable and easy to navigate. This means bills you can understand. This means the navigation, this means having your physicians kind of all on the same team where you’re not showing up to every appointment to fill in your physician what the other specialist said and the other specialist said and you’re navigating this confusing system on your own but the health care system instead is there is you know, orienting around the care that you need.

David Smith 

Okay, so to recap, people are worried about costs and they feel like their health care might just disappear when they needed them most, they want choices and they want a system that’s easy to navigate. This all seems pretty reasonable, right? When patients feel heard, then they feel like they can trust their providers. But the way the system is working now exacerbates the distrust many folks right we have for their doctors and this issue has been in the spotlight a ton with the COVID vaccine.

Venice Haynes 

I’m thinking about, you know, the conversation about vaccine hesitancy and people that don’t trust the medical system. Well wonder why people don’t trust the medical system, you’ve got a history of a medical system that has, you know, sterilized people and criminalizes, you know, being sick. So, but you can’t you don’t stop being sick. So you have to get health care somewhere. What do you do?

David Smith 

This came up in my discussion with Dr. Lisa. I asked her she connected today’s lower vaccination rates in Black and Brown communities with a historical distrust stemming from events like the Tuskegee experiments. This is an event where African-American men were intentionally infected with syphilis, and then left untreated for years to track the disease’s progression.

Dr. Lisa Fitzpatrick  36:15

I wouldn’t say that this is linked to Tuskegee, is linked to people’s experiences and the conversations they have at the dinner table about what happened to Uncle Joe, he went to the hospital, and he ended up dead, like what happened in there. So those are the kinds of events and experiences that are influencing and sort of deepening the distrust, and we’re not doing enough to address it, to really understand it, and to own it and to say, I understand, tell me more about that. What can I do?

David Smith 

These dinner table conversations are happening all over the country. The stories we tell each other about the health care system carry just as much if not more weight, as the advice passed down by the experts, Natalie and her colleagues are trained to hone the power of storytelling to educate others and empower people, she gets to visit people at home and hear what they’re going through.

Natalie Davis 

In California, a woman had to go get an MRI, often for her, one of her chronic conditions, and the doctor made her cry every time she came to go over the results. And she sat around a table with people she kind of knew everybody around that table looked at her and said, and she just said, well, you know, I just keep going back to them. Because what else am I going to do? And everybody there, talked about a story they had similarly, but said don’t go back to that person, like let us help you find a different doctor, let us go with you. And you can see that moment of community happening, but that woman also recognizing that she didn’t have to keep doing that.

David Smith 

For Natalie and Venice, listening to everyday people is so crucial, because they’re the ones who need to be driving systemic change and policy solutions.

Natalie Davis  38:02

I mean, I think our healthcare system is so big and so complicated, and so many middlemen, and so many policies and procedures, and, and often, you know, created that way, perhaps sometimes by design often, you know, when we think about systemic issues, it most certainly is by design. But I guess it’s all kind of goes back to making sure that you know why we started United States of cares to go out and hear these stories, find out where this is happening systematically find out where these are happening, you know, to different populations are within the same population and really understanding that, you know, taking those in to figure out how we can make a better healthcare system. And, you know, one that, that values all people where they are, who they are, how they are.

Venice Haynes 

It’s time to hear people listen, elevate voices, and embed that into policy, approaches, and healthcare reform.

David Smith

I’ve thought about my dad a lot while making this series. He never found a doctor who spoke his language, so he just kind of hopped from one provider to another, and the healthcare system, let that play out until he died. It’s why I tell his story over and over again, to try to help others avoid that same ending. The system is convoluted and often feels totally alienating. But one of the most powerful tools we have in fighting it is telling our stories so that we don’t feel like we have to do this alone. Next week, we’re sharing voicemails and interviews with listeners and advocates from coast to coast. We’ll talk about day-to-day struggles and hear how everyday people are navigating this system and fighting tooth and nail for their loved ones.

Speaker 5 40:21

I have so many thoughts and feelings about healthcare in this country. I always have but especially after being diagnosed with breast cancer, I learned through that experience that I have great insurance. But even with that great insurance, my question is, why did it take me three years to pay off cancer treatment?

CREDITS

The COST OF CARE is a Lemonada Original. The show is produced by Jackie Danziger and Kegan Zema. Our associate producer is Giulia Hjort. Music is by Hannis Brown. Executive producers are Stephanie Wittels Wachs, Jessica Cordova Kramer and David Smith. Help others find our show by leaving us a rating and writing a review. If you have a story to share, call us at 8334-LEMONADA or send us an email at costofcare@lemonadamedia.com. Follow us at @LemonadaMedia across all social platforms or find me on Twitter at @CHIDavidSmith. Lastly, we want to express our appreciation for the men and women who get up every day and work in this system with a passion for improving our health. We are grateful for the work you do. We’ll be back next week.

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