Information Inoculation: Defending Against Medical Myths: Why we need to fight misinformation about vaccines | from TED Health

Ethan Lindenberger never got vaccinated as a kid. So one day, he went on Reddit and asked a simple question: "Where do I go to get vaccinated?" The post went viral, landing Lindenberger in the middle of a heated debate about vaccination and, ultimately, in front of a US Senate committee. Less than a year later, the high school senior reports back on his unexpected time in the spotlight and a new movement he's leading to fight misinformation and advocate for scientific truth. After the talk, Shoshana interviews Dr. Jennifer Reich, a sociologist, and asks the question, “Where has vaccine mistrust come from?” -- and how transparency in clinical trials and federal advisory boards are key in gaining community trust. For the full text transcript, visit go.ted.com/BHTranscripts https://go.ted.com/BHTranscripts Hosted on Acast. See acast.com/privacy https://acast.com/privacy for more information.

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• 0:00Speaker 00

  Hey, I'm Dr. Shoshana Ungerleiter, the host of TED Health, another podcast from TED. In today's media landscape, it can be challenging to distinguish fact from fiction, especially when it comes to healthcare. On TED Health, we're doing a three-part series debunking the stickiest, most popular medical myths. So in place of your typical "How to Be a Better Human" episode, today you'll hear our first episode of this series, where I'll look at how vaccines protect us from diseases and how our body responds differently to each ailment. If you enjoy the episode, check out the rest of the series on TED Health, published every Tuesday, wherever you get your podcasts. Now, onto the episode.

• 0:45Speaker 00

  This is TED Health, a podcast from TED, and I'm your host, Dr. Shoshana Ungerleiter. Speaking up for what's true, especially when it's personal, isn't easy. But in a world where misinformation about health spreads fast and loud, choosing to use your voice can be a powerful act of courage. Today, we're kicking off a special mini-series on vaccines. And in a time when misinformation spreads quicker than facts, understanding vaccines has never been more critical to our personal and public health. This mini-series explores how trust in science is built and how it's broken through real stories, expert insights, and what we can all do to stay informed.

• 1:28Speaker 00

  As our public health systems face mounting challenges, this series offers the clarity and context everyone needs to make confident, evidence-based choices. In today's episode, you'll hear from someone who did just that. Ethan Lindenberger didn't set out to start a movement. He just asked a question. And in doing so, he stepped into one of the most polarizing public health conversations of our time. His story is a reminder that you don't have to be an expert to make an impact. You just have to be willing to stand up for what's real, even when it's uncomfortable. Because protecting our health and the health of others often starts with one brave decision to speak out. Then stick around after the talk for an interview with Dr. Jennifer Reich,

• 2:14Speaker 00

  an expert on why some parents choose to not vaccinate their children. But before we dive in, a quick break to hear from our sponsors.

• 2:30Speaker 01

  Hi there. It's Adam Grant from TED's Rethinking Podcast, and this episode is brought to you by ServiceNow. I get to spend my days studying how people think and what it actually takes to change our minds. It's work I find deeply meaningful. But even in meaningful work, there's still busy work: the admin, the repetitive processes, the invisible load that pulls attention away from what really matters. That's where ServiceNow's AI specialists come in. They don't just tell you what you should do about your busy work. They actually do it. Start to finish, cases closed, requests handled, no extra work for you. To learn how to put AI to work for people, visit servicenow.com.

• 3:10Chris Duffy?

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• 4:05Speaker 00

  And now, Ethan Lindenberger, in 2019.

• 4:08Speaker 03

  To start, I want to share with you guys something about my hometown of Norwalk, Ohio. Now, as this video stated, I'm from Norwalk, which is an extremely small town, about 15,000 people. And really, in Norwalk, if you want to do something fun, you go to Walmart or drive half an hour to something more interesting. And-- For Norwalk, I've lived there for my entire life. I'm a senior at the local public high school. And, you know, it's something to where I really enjoy my small town. And I'm just a normal kid, you know? I lead debate clubs, I volunteer at my church. And back in November of 2018, I made a small Reddit post asking for advice on an issue that I was encountering, that I needed some clarification on. And this issue, as was stated in this introduction, was something towards vaccinations

• 4:52Speaker 03

  and how I was not immunized against various diseases, including polio and measles, as well as influenza, HPV, hepatitis, and the standard vaccines someone my age would receive. Now, this question I asked was simple and pretty strange because, you know, I wanted to get vaccinated. That's kind of weird, but you know, it happened. And then this turned into a public story, because I wanted to get vaccinated. So that was kind of strange. And then it blew up more. And I was doing interviews and talking to more people. And again, I'm a normal kid. I'm not a scientist. I don't lead a nonprofit. I am, again, a pretty casual person. I'm wearing a hoodie. And because of this, this question and this story, because I want to get vaccinated, and this interesting situation I was in, I saw that I quickly was in this public setting

• 5:37Speaker 03

  of an extremely important controversy and discussion taking place. Now, I saw that the stories and headlines were pretty accurate for the most part. You know, "After Defying Anti-Vax Mom, Ohio Teen Expresses Why He Got Vaccinated." Pretty accurate, pretty true. And as stated, I testified in front of a senate committee. So there, they said, "This teen who self-vaccinated just ripped his mom's anti-vax beliefs in front of Congress." Okay, I didn't really do that, but I said, "That's fine." And certain news outlets took it a little further. "God knows how I'm still alive. Teenager 18 finally gets vaccinated and attacks his anti-vax parents." So I did not attack my parents. That's not accurate at all. And, you know, really, my story was more about controversy.

• 6:22Speaker 03

  It was about how my mom was bad and I was good and I was ripping her a new one. Not true, not what was happening. I never was rude towards my mother. And even in public settings where I expressed how her beliefs were misinformed, I said that she was a loving mother. And that's important to understand. Because a lot of people, I think, in the scientific community that understand why vaccines are so important can really be confused why someone would not vaccinate. Really, it's, we can compare it to someone not taking their child to the ER. That's a very dangerous situation to be in, and it shows some lack of empathy towards your children in some regards. And, really, I can understand that. I can. But my mom, she was misinformed and misled by sources that convinced her that if she was a loving parent, she wouldn't vaccinate.

• 7:06Speaker 03

  Now, when I encountered this and I talked to my mom, it, you know, didn't obviously go well at first, because I was wanting to do something that she thought would either cause autism or maim me for the rest of my life, and I said that I wanted to do this, didn't really fly, didn't really go well. But, the thing that I found interesting was that when I had started to get into this circumstance, do these interviews, there's one question I proposed, wasn't a positive one, "What in the world have I gotten myself into?" That's what I asked constantly. Because, again, I am not an expert, I am a normal kid, and now I'm talking to CNN and Fox News about a scientific discussion that really, should I really be facilitating? Should I be commenting on? And, a lot of people questioned that, and for good reason, but I never claimed things that I didn't understand. I talked about my personal experiences, and really, even at the senate hearing, I just

• 7:51Speaker 03

  talked about how misinformation is dangerous. My mom got a lot of her beliefs from social media, from Facebook, and from organizations that were allowing their platforms to push lies that were very dangerous. Now, I also saw that, as I was doing this, and I was doing this as respectfully as I could and as accurately as I could, I was getting a lot of criticism, a lot of very angry people. I know when I was in DC for that testimony I gave, I remember I was looking around the office building and three ladies got in an elevator with me and said, "I'm the reason that children are being maimed and murdered, and I am basically Hitler." So, that was fun. And, so, really, in, for most circumstances, for most teenagers and most people, when they get criticized, this leads to doubt. And that doubt leads to questioning, and that questioning leads to quitting.

• 8:35Speaker 03

  Because when you have a topic that you're interested in, or a movement that you want to be a part of, and you're taking a stance and you're saying what's true, good ideas don't avoid criticism. And for especially young people, they have a hard time dealing with that. And these important discussions that need young people to take a part in, it takes a lot of commitment. And I'm not sitting here saying that I'm amazing and I'm cool, but here's the thing that's important. Through me joining this movement and this important scientific discussion, here's what happened. Facebook changed their platform. They were going to change how they approached anti-vax content. And then recently, GoFundMe took down anti-vax campaigns. We're talking about how movements like this are causing actual change, actually impacting the way this game is played, and the misinformation that's lying to people and convincing them of very dangerous ideas. Now, before I leave, because I only have a short amount of time,

• 9:20Speaker 03

  I want to give you guys one important thing to keep in mind. What important takeaway from this all? What you can do and what I did. What I did wasn't I didn't do amazing research and studies and take information and present it to people. I didn't have deep intellectual, scientific debates with people. All I did was share my story. And that's enough for most people. That's enough for most people to understand the anecdotal experiences, the real people behind the data. Because data doesn't resonate with people. People resonate with people. And you have to keep that in mind, because when you are talking about a topic and you're sharing your story and sharing what is important, you stay authentic. Stay authentic to the data, to the information, to the importance of this topic. If I was talking to an individual and they said, "Why are vaccines important?",

• 10:04Speaker 03

  I would say nothing alongside any other answer. I would not in any way fathomably give them an answer outside of, "People are dying and that's important", and that children are dying and that's important, and that we're having disease outbreaks that should not be here. And I believe, as John Boyle put it, "These diseases should be in history books and not in our communities." So because of that, you need to make a personal decision also to stand up for truth. You need to make a personal decision for yourself to say, "This is accurate, this is what's real, and these lies are not okay." Because it started with me doing that on a personal level. I wasn't from small town to senate in a day. It wasn't like I go to bed and I wake up and there's Senator Isaacson, he's asking me questions about vaccines. It was a slow progression and it started with me saying,

• 10:46Speaker 03

  "This is true, my mom doesn't believe it, but that's okay." Because that doesn't change the truth. It doesn't change what's accurate and what's important. And honestly, the biggest thing, this whole idea of unbreakable, remain unbroken. When you stand there for what's true, when you have that criticism and you're trying to cause a movement, don't sway. Thank you.

• 11:12Chris Duffy?

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• 11:54Chris Duffy?

  environmental change. In partnership with the Rolex Perpetual Planet Initiative, this is Planet Visionaries. Listen or watch wherever you get your podcasts.

• 12:05Speaker 00

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• 13:04Chris Duffy?

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• 14:09Speaker 00

  That was Ethan Lindenberger at TEDx Mid-Atlantic in 2019. Now I want to welcome Dr. Jennifer Reich to take us deeper into this topic. Dr. Reich is a professor of sociology at the University of Colorado Denver and a researcher on vaccine decision-making. Her work explores how parents make choices about childhood vaccination and how those decisions are shaped by social, cultural, and political forces. She's the author of Calling the Shots: Why Parents Reject Vaccines and has spent years studying how trust, identity, and misinformation influence public health. And today we'll be talking about what drives vaccine hesitancy, how misinformation takes

• 14:53Speaker 00

  root, and more importantly, what we can do about it. Dr. Reich, welcome. Thanks so much for having me. So Jennifer, you've spent years listening to parents who are skeptical of vaccines. And I want to start there. What have you learned by really listening to these stories? And what might we overlook when it comes to these parents' concerns?

• 15:18Speaker 04

  I started thinking about vaccine hesitancy because I was interested in how families make decisions for themselves and their children. And how do they decide what's in the best interest? And I start with the premise that everybody wants healthy, successful children. And if we start with this basis, then we can ask questions about how we have such different perceptions of the same thing sometimes. I started thinking about this, oh, about 15 years ago. And at the time, I had young children myself. And I was also a postdoctoral fellow in health policy. And a lot of my life was spent talking to researchers and healthcare providers who were really increasingly frustrated that they didn't understand why people didn't trust their opinion about vaccines. And at the same time, I was a parent with young children, talking to other parents,

• 16:01Speaker 04

  watching online conversations, and often hearing this story about how you don't really need vaccines anymore. As long as you support nutrition, as long as you breastfeed, as long as you work hard as a mother, you can avoid the worst outcomes of infectious disease. And because I had one foot in each of these worlds, I was really fascinated about this disconnect. And so I really started thinking about this at a time when not a lot of people were actually that worried about vaccines. We hadn't seen measles in a long time. And I remember even at the time, researchers in my field would ask, like, why are you studying this question? Like, who cares about vaccines? But I could see under the surface that there was this growing discontent. I spent almost a decade talking to parents, talking to healthcare providers, attending

• 16:44Speaker 04

  conferences and organizational meetings of groups that oppose vaccine mandates, of really trying to educate myself of how people come to understand vaccines, and then how they make decisions that work for them in the ways that they imagine are best aligned in their lives. And what that allowed me to see is that a lot of the ways that healthcare providers and public health experts imagine these parents is really different than what I saw in reality.

• 17:10Speaker 00

  I think it can be easy to dismiss people who believe misinformation as anti-science or irresponsible. But your work shows us that there's so much more beneath the surface, and you've alluded to this a bit. What are some of the emotional or social reasons people might reject vaccines?

• 17:32Speaker 04

  I think it's really easy to assume people make decisions because they're ignorant, because they don't understand all the facts. But when we think about how all of us make decisions every day, even for people who love vaccines, who trust health, we all make decisions that are not always evidence-based in the ways that healthcare providers or experts would tell us. I often mention that I'm not confused on the nutritional properties of ice cream, but I like ice cream, right? And my kids and I go get ice cream on a hot day, and it has a social and emotional component to that decision, right? It's not just health literacy that drives decision-making. If it were, we would see record-breaking sales of broccoli and very few sales of wine. And I don't think that's the pattern, right?

• 18:11Speaker 04

  So what I find is really two social forces that encourage behaviors and encourage beliefs that actually encourage rejection of vaccines. And so what I focus on in my work a lot is that we have sort of two things that have happened culturally over the last several decades. One is that we've really oversold the idea that people are personally responsible for their health and that they can personally manage illness. We tell people all the time that they can personally avoid disease if they work hard. We encourage people to count their calories, count their steps, track their health, and what we know is that's just scientifically untrue. Most of disease is some combination of environment, genetics, and bad luck. It's not entirely mitigable, and yet we've oversold that story.

• 18:55Speaker 04

  That story is echoed across all sorts of corporations and products, but also even in our own doctor's offices, even in our own public health messaging. And I think people believe this. And then through that lens, then, it becomes much harder to persuade people that community strategies, which is really what vaccines are, they work best when lots of people in a community use them, are really important. And instead, vaccines start to become seen as a technology of personal benefit. So then individuals ask the question, do I need this? Do my children need this? Will we personally benefit from it? And if not, we don't want it. And that's a really different perspective than the people in my community need high levels of immunity to protect others who are vulnerable.

• 19:37Speaker 04

  The other factor that plays a part in this is the way we've individualized most of parenting. And so we've seen over the last several decades, a higher focus on things like school choice. The idea that some children can have terrible schools as long as your kids don't have to go to them. Rather than saying, how do we make sure all children in the community have adequate schools? Or have safe environments, or have enough to eat, right? It's a very different perspective to say like, I want to make sure my children are okay. But I'm not responsible for other people's children. And that separation then also allows vaccines to become a kind of question of do we really need them? Are they important? If I'm really focused on my child as the centerpiece of my decision making? Rather than part of this community conversation.

• 20:20Speaker 04

  And so when I think about those two pieces together, this kind of personal responsibility for health? And also this personal responsibility for your own children, but not necessarily all children. Vaccine hesitancy then is a really logical outcome. Because not all vaccines are equally beneficial to everybody. They're not all equally necessary at all points in the life course, right? But they all are part of this larger community strategy for protecting individuals. So to give you a really concrete example. The rubella vaccine, which came about in the 1960s, is a vaccination that's uniformly recommended for all children. But the truth is that rubella is not a particularly significant illness for children when they get it. The reason vaccines are recommended for children is because before the vaccine,

• 21:03Speaker 04

  rubella was the leading cause of birth defects in the United States. And when a pregnant woman was exposed to the virus and became infected, it often caused devastating outcomes for her fetus. And so the best way to protect pregnant women, it turns out, is to protect small children, because it turns out pregnant women are often around young children. And then the people who receive the vaccines would go on and have their own bodies and their own future fetuses protected, or their partners, and thinking about the sort of general intergenerational benefit of that rubella vaccine. It's indisputable, the difference it's made in terms of rates of congenital rubella syndrome, blindness, deafness, we can see the difference. But it's not necessarily a vaccine that personally benefits you, but it's really important for the community.

• 21:47Speaker 04

  There's other vaccines that are largely about you, that benefit you most exquisitely. The tetanus vaccine has no community benefit. But tetanus is a terrible disease. And to cure it or to treat it is a very resource intensive process of gathering enough anti-toxins, often across multiple states from multiple poison control centers to save one child or one person who's infected. And that's a vaccine entirely about personal benefit. So vaccines work differently for different people, but they're part of these broader strategies. In my study, I found families who have different vaccine strategies for each child in their family, because they really weighed vaccines as a risk and benefit for each person separately

• 22:28Speaker 04

  at different times of their lives and came to totally different conclusions. And that's not typically how we think of public health interventions working, and it's definitely not how they work best.

• 22:38Speaker 00

  Wow. Thank you for connecting the dots between this very, I would say, American idea of thinking about the individual and personal choice to thinking broadly about community health and how we tend to frame public health. And I want to come back to something that you alluded to, and that is, for many parents, making healthcare decisions is deeply tied to love, to identity, and a desire to do what's best for their children. How does that intention sometimes lead people down a path of mistrust?

• 23:17Speaker 04

  One of the questions we can really ask is, where has vaccine mistrust come from? Like, why do we have such high rates of suspicion? And I'll say that even for parents who vaccinate their children, who consent to all vaccines, they also express some anxiety about the decision. As they do their own risk benefit calculations, they've decided the benefits of vaccine exceed whatever fears they have, but very few people are uniformly excited about vaccines. And that's a really interesting new question, because we can look back historically at eras where people were willing to fight and bribe their way into getting access to things like polio vaccines. People were desperate for access to lifesaving vaccines. And so to think about how has that shifted is really important. I think we saw historically examples where medical professionals were overly convinced,

• 24:01Speaker 04

  like they were selling the story that vaccines are always safe and always necessary. And so when parents saw adverse reactions, which are very rare, but do occur, they often felt dismissed and ignored. And we saw this during the early days of the former pertussis vaccine, which was a whole cell vaccine, which is different than the one given today. And there's disagreement in the medical profession still to this day of whether that was correlation or causation. I've interviewed a lot of people who work in the vaccine injury compensation system, who highlight that those claims went away when the vaccine changed. And that's a reason to believe it was probably related in a very small number of people. But that's a real consequence. It also tracks on to other kinds of conversations that we saw around distrust of healthcare.

• 24:43Speaker 04

  We could think of the women's health movement and women who were being dismissed about their experiences in reproductive health, their experiences of side effects of things like birth control pills, right? We can think historically of the way birthing rights movements, movements towards other kinds of control of one's own health were really important to healthcare and made healthcare often better. Arguments about access to HIV and AIDS drugs through the 1980s that really changed the regulatory process were really significant. And so the early days of vaccine hesitancy really bump up against a lot of these other social movements and take some of the information about how my lived experience matches what experts are telling me is true. Part of that individualization is we often trust our own sense of what's true more than patterns across the population feel relevant to us.

• 25:28Speaker 04

  And so when we think about how do people come to really question, do I need all vaccines? Vaccines are many times conceptualized even amongst people who like them as a necessary evil. And that's a really important thing to really question about why we've gotten to that place where less is always more. Part of it is that there's distrust of pharmaceuticals in general, right? So the idea that less is more feels true when it comes to medicine, that, you know, you should avoid as much medicine as possible. You should only take it if it's entirely necessary. But of course, that's also not always true. Less insulin is not better than the correct amount of insulin. Less albuterol for someone who has asthma is not better, right? So we could think about the right amount of medications are often the right answer, but it feels like you should try to avoid it if at all possible.

• 26:11Speaker 04

  And vaccines have really fallen into that category. One of the ways that's helped me think through this is I was often asked by parents. Why does a 200-pound football player get the same dose of a vaccine as an eight-pound baby? And I thought that was a really interesting question, so I asked vaccine researchers in the course of my research, I asked them about this question. And what they explained to me was really helpful. They said vaccines are not medications, they don't have a volume of distribution. And the way I could understand that was if you sneeze on a 200-pound football player and you sneeze on a baby, they don't become differentially sick, right? It triggers their immune system in very similar ways. And that vaccines are a kind of immune trigger, not a kind of medication.

• 26:52Speaker 04

  But we haven't really talked about it this way because for so many decades, I think, parents were just told to trust their healthcare providers and not ask questions. And that's not how any of us accept healthcare anymore. We all want to ask questions. We all want to gather our own information or do what people often call do their own research. To be fair, it's not research the way researchers do research, but to gather information, right? The way we research products and we research restaurants and we gather information to make decisions that feel true to us. People all want healthcare to feel personalized. They want to feel seen. They want to have their lifestyle taken into consideration as they make decisions. And so, parents are increasingly expecting that from healthcare providers. And healthcare providers, I think, are adapting, but I think it's been slow because for so many decades, they were the experts.

• 27:36Speaker 00

  Yeah. Yeah. And further, we aren't necessarily taught how to communicate effectively with patients in our medical training, I would say. And so, building on that, you've said that how we talk to people matters just as much as what we say. So what common mistakes, from your perspective, do healthcare professionals like me or even well-meaning friends make when trying to change someone's mind about this?

• 28:06Speaker 04

  I love that you said you're not really taught how to talk to patients in these ways, because I think patients are not often taught how to talk to healthcare providers either. Most of us don't know how to be healthcare consumers and advocate for ourselves in ways that are productive and not confrontational. And it's easy to, I think, have communication break down as healthcare providers, I'm asking questions, you perceive me as distrustful, we have conflict, and there's actually disagreements amongst pediatricians. Of whether they should even continue to see parents who reject vaccines because they don't trust their judgment, they present risk to other patients. And it's a really, I think it's an area of controversy even amongst pediatrics. So what I'd say is like, you know, how do we start moving this conversation forward? I've talked about the ways individualism has really overshadowed the way we think of public health. I think that was true before

• 28:50Speaker 04

  COVID. I think it's even more true since COVID. We do know that vaccine hesitancy has become more partisan since COVID, and I think that's worth highlighting, right? This is, that was not true at the time I was doing my research, that really shifted during COVID, but that people's identities get more closely aligned with their political membership, and that's coming into vaccine decision making, too. I think when we run into people who disagree with us in general, and when it comes to vaccines in particular, it can get really heated really quickly because infectious disease is one of these things where your individual choices don't just stay with you. So it's hard to stay engaged, and this is just an agree to disagree kind of situation when your decisions affect me directly. So it's hard to think through what makes sense. But we know a couple of

• 29:31Speaker 04

  things. Confronting people to tell them that they're wrong doesn't usually persuade people. And that the idea that if you tell people that they're ignorant, or anti-science, or even behaving selfishly, that I think has almost never persuaded anyone to rethink their decisions. So that's a terrible place to start. We also know that if healthcare providers and public health experts are committed to this health literacy model, going back to, I'll just educate you and you'll make the decision I want you to make, we just know that's not going to work. So telling people statistics, trying to scare them with pictures of measles, telling them the population risks tend to be relatively unpersuasive. If we remember, though, that I think everybody wants healthy communities, everyone wants healthy children, how is it that this is a technology that's not aligned with that

• 30:16Speaker 04

  view? And we start with that question of what are your concerns and how do we work from them? We can often start to close the gap and think through. I'd say one of the things that healthcare providers are going to have to continue to grapple with, though, is the story that all vaccines are equally important all the time. And I think the easy answer is yes. Vaccines are well-tested, studied, and monitored long after licensing more closely than any other pharmaceutical product in existence. And I don't think people know enough about that. There hasn't been enough transparency about those safety monitoring systems that are really looking for minute risk in upticks in populations. So I think that's really important for people to know to really build more trust in the safety story of vaccines.

• 30:59Speaker 04

  But also, what I found in my research is it's not often an all or nothing decision, and it's usually not a one and done decision. So, parents often told me that they frequently revisit vaccine decisions because of travel, because of their children's interest in joining the military, or being a missionary, or going to college. That vaccine decision-making comes up over and over again as a family member develops leukemia, and they have to rethink their role in taking care of family members. Vaccines, decisions are not just, "I didn't want it in the first thirty days, or the first six months, I'll never want it." And so, staying engaged in those conversations can be really important to families. I'd say also, families are often open to some vaccines, but maybe not all vaccines.

• 31:41Speaker 04

  And healthcare providers really have to decide how they feel about that. And state legislatures are grappling with this right now, actually, about how vaccine exemption laws should work. Can you opt out of one vaccine but accept others? I find that part of this individualized framing of vaccines as a tool for personal optimization is that families really think about each vaccine and its risks and benefits. And I say that it's fair to say that they dramatically overestimate the risks and underestimate the benefits of vaccines. So, this is not to say that these are accurate, mathematical projections, but they're emotionally-driven expectations. And that's really important to think about as people make decisions. But as people are making decisions, which diseases seem very serious?

• 32:24Speaker 04

  Which ones seem plausible or probable that they're going to encounter in their community? And which ones do they feel like might be minute or rare, and therefore, they can delay the decision or skip this particular vaccine? And so, having those conversations, even if it's things like rubella, where your child might not personally benefit, but it might be really important to the people around your child, can be a really powerful conversation. And we saw that during COVID. We see that with flu vaccines, right? Flu is terrible for everybody who gets it, but it's a powerful tool for protecting seniors in our community. And so, thinking about how we do that together, and where families see their role, where parents see their participation, can be really important, too. And those are really different kinds of conversations that I think we all have to start thinking about how to have.

• 33:07Speaker 00

  Yeah. And so in terms of how to have those kinds of conversations, we often talk about vaccines in the context of a scientific framework and discuss the data. But many people respond more to stories. Why is that? And how can those of us who care about public health use storytelling more effectively?

• 33:31Speaker 04

  Some people need statistics. Some people will only be compelled if they can see the numbers. They respond with their head. But there's people who respond with their heart, right? They want that social connection. They want to feel like this is relevant and they want to really manage their own anxieties. And because I continue to do research on vaccine decision making and I watch lots of online communities, even right now, as measles is hitting a record high, parents, even when they say, I'm really nervous about getting the MMR vaccine and I'm also nervous about my child getting measles, how do I manage this? That emotional experience of what if I make the wrong choice for my child is ubiquitous. And to be fair, mothers in particular are constantly bludgeoned with the message that they might make the wrong decision. That good mothering is supposed to be a series of perfect decisions, whether it's tutoring

• 34:14Speaker 04

  or schools or clothing or car seats or strollers. Every decision is supposed to be a perfect decision. And we know from other people's research, that's exhausting. It's wearing people down. And so there's a certain kind of decision making stress that gets put into vaccines that this feels like a high stakes decision that people really agonize about. So to hear, here's how I made the decision. Here's how I worked through this. Here's how I connected to other people who need me to do this. Or here's what I've seen as a healthcare provider and this is why I really want to help your child. Those stories can lower anxiety. They can help build connection. And often what people are looking for is the person you're telling me about or is the person who's telling me about themselves similar to me? Do they share my values? Do they share my lifestyle?

• 34:59Speaker 04

  Do they take nutrition seriously? Are there ways that they connect to my life that feel relevant, that I can feel good about this decision too? And so those are the spaces that I think can be really powerful. But you have to figure out what people need in this situation. I'd say the thing with statistics is we talk about percentiles of risk as if they're inherently meaningful. And I saw this when I had a family member with cancer and they had to decide whether or not to pursue chemotherapy. And they said, it'll reduce your risk of recurrence by half. And you think, of course, do chemotherapy. That's, that seems so obvious. Except it was going to reduce it from something like six percent to three percent. And that is half mathematically, but it's also three percent.

• 35:45Speaker 04

  And so that family member was stacking up. What is a three percent reduction in risk stacked against other health outcomes of chemotherapy? Other like sacrifices I would make to my long-term health or my ability to participate socially? What is three percent in your life? And I watched this with fascination because so many people in my family had really different interpretations of what that three percent means. And that was just such an important reminder that we are calculating probabilities and risks every day, all the time. But we do so in a way that really comes more from our intuition in our heart than it does from our math calculations. And so keeping that in mind, too, that those same statistics, one in a million is both high and not high, right? Like, what is one in a million risk? If it's your family, it's a hundred percent.

• 36:28Speaker 04

  So how do we start to think through what people need to make decisions that feel good to them, that feel that they're comfortable with and that align with their goals and values for their own families?

• 36:38Speaker 00

  Hmm, yeah. I want to zoom out a little bit, Jennifer, and I know that you've studied this issue across political and cultural lines. What surprises you most about how different communities form their beliefs about vaccines and really medical care in general?

• 36:57Speaker 04

  When I started studying this question a very long time ago. The thing that surprised me most is at the time, there was clear evidence that the people who are most distrustful of vaccines and most likely to opt out of vaccines by choice were white, married women with some college education. And that just seemed counterintuitive to me because everything I know would say that middle-class and affluent white families would trust the government and trust the state and trust science more, not less. So how do I make sense of this pattern? And what I came to in talking to healthcare providers and Medicaid providers and more families is that if this is really your priority in terms of decision-making, it often means that other kinds of concerns have been met.

• 37:40Speaker 04

  You have housing stability, you have adequate food for your family, you are able to absorb a 21-day quarantine if whooping cough shows up at your child's school without getting fired from your job, right? That there's a certain kind of background that overlays the ability to make this your top priority. What I will say that surprised me the most moving forward was that I did not expect during and after COVID to see such vicious attacks on public health agencies and practitioners. So that we started to see, as things became more partisan, a real distrust about who

• 38:22Speaker 04

  provides information, how local communities try to solve problems for their own residents, whether it was mask requirements, whether it was vaccine mandates, but also whether it's things like managing drinking water, that those things became politicized because each individual really felt empowered to make their own decisions. And those things have been surprising to me, and I think increasing in frequency, not decreasing. As we look globally, it's worth noting that only three countries in the world experienced an increase in vaccine trust during COVID and since COVID. So almost every nation has also seen a drop in confidence in the importance of vaccines and the expectation that people should use them to protect all the people in their community.

• 39:07Speaker 04

  And so that tells us that there's something larger at work about how we're going to make sense of this going forward and what it means to have technologies, but also build systems around the distribution of those health technologies that are going to be trusted and used in ways that are aligned with other community goals. And I think we're going to have to continue to think of new solutions because every measles death right now is preventable and to have seen for the first time in decades, children dying of a preventable disease, that really asks all of us to think harder about what's happening.

• 39:42Speaker 00

  Yeah. I mean, we're living in a time certainly when trust in institutions is incredibly fragile.

• 39:50Chris Duffy?

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• 41:56Speaker 00

  So what do you think needs to happen to rebuild trust in public health and science more broadly? So we can avoid these vaccine-preventable deaths, for example?

• 42:07Speaker 04

  We're in a really hard moment right now in terms of who's in the government agencies, who's putting out information, and how we have transparency. I think one of the challenges is that we've had many federal advisory boards over the years, including the Advisory Committee on Immunization Practices, that are responsible for reviewing all the science on vaccines to make decisions about their safety, but also their efficacy. On one hand, it's easy to say, like, it's a government agency, so of course they're going to push vaccines. They're going to always say vaccines are great. But actually, those bodies have been really significant historically in identifying adverse reactions and identifying rare complications of vaccines, and then suggesting that they be taken off the market.

• 42:51Speaker 04

  And so that's been a really significant tool. And those meetings have been public, and they've allowed for open comment from the public. And that kind of transparency has been inadequate, but also really important. What we're seeing right now is there's pulling back from that transparency. So we're losing access to some of those committees. We're losing access to the ability to watch the hearings and weigh in on them as citizens and as people who consume these products. And so that's one step, is the more transparency, the more individuals can say, I want to understand this. I want to understand how a vaccine gets to market. I want to understand the steps of the research. I want to understand the clinical trials process to see what's happening. I want to understand why you think this is recommended at six months and not five years. And tell me why.

• 43:37Speaker 04

  Whooping cough is recommended so young in life even though it's a lifelong threat? How do I make sense of that? And people deserve answers. They have good questions and there should be more opportunities for a kind of dialogue that I think can be a really powerful tool for bringing people along. We somehow have developed this thing that the public agencies, that the government, that institutions are separate from us. And that's unfortunate because in fact, the institutions are ours. They work for us. As much as the COVID vaccine became politicized, we lost the opportunity to really highlight that we paid for that science, that individuals, taxpayers, contributed. That should feel like the way it did with the polio vaccine, which was also funded by the public.

• 44:21Speaker 04

  That this is a public resource that we together created with transparency and clarity. And we've lost the ability to have, I think, that conversation about citizen science, about the way we're all part of these institutions and that they should be accountable. And instead, I think, as we're seeing right now, there's this moment of shrinking government for the sake of shrinking it, rather than making it accountable to the people. And that isn't helping our sense of trust, I think, at the moment. So that's going to be an ongoing battle. The good news is, I think, where we started, which is that communities are also local, right? And that networks are local. So people can get together and do great things. And we've seen examples of communities that had a very low vaccine rates, that got together, that listened to people's concerns

• 45:04Speaker 04

  and turned the tides in their community to make sure all the children in their communities were safe. What we know is people swooping in from outside and telling us how to live our lives is not persuasive. And so we really need those kinds of local voices, local leaders who understand our experiences. And there's the opportunity, I think, to start then building those networks and then building them outwards so they can grow. We share information and we have to just start talking to people we don't already know more and having conversations to start really rebuilding a lot of the things that became fractured when we were all apart.

• 45:36Speaker 00

  For people who want to help combat health misinformation, whether you're an expert or not.

• 45:44Speaker 00

  What can we do and where does somebody begin with this?

• 45:47Speaker 04

  It's hard, right? We're all tired. Everyone's under a lot of stress. We have good evidence that healthcare interactions, for example, have gotten shorter and shorter over time. So there's less time to really have those conversations and listen. So there's absolutely structural barriers for our ability to do this. I think for healthcare providers in particular, and I'd say pediatrics has its own unique stressors right now as a profession, including workforce shortages. It's really hard to say, I know it took you four months to get an appointment. I know it's taken a long time to get here and I really want this for you. And have families then feel frustrated to come in uncertain to know how to manage those expectations, right? These are like structural issues that are beyond the individual. And so we have to acknowledge that too, that we are all operating in ways

• 46:31Speaker 04

  that are not exactly what we would design if we had the freedom for these conversations. But having said that, I think there's still possibilities within that. I know pediatricians who have been really successful in listening to parents' concerns and rather than saying, you're wrong, I can add information for you. So just as a small example, one of the things that's become increasingly rejected is vitamin K injections for newborns. And in case folks don't know, like vitamin K is typically, your body makes it. You have access to it during newborns have access to it from their mothers, but sometimes there's a deficit. And those deficits can often lead to a really rare but significant injury where there's brain bleeds. In the course of my research, I actually saw a baby die of vitamin K deficiency

• 47:13Speaker 04

  because it can cause brain bleeds, it can cause permanent disability and even death. It's very rare, but when it happens, it's devastating. And I've had healthcare providers tell me that when they talk to families and they say like, I don't care if you put the hepatitis vaccine off for 30 days, but this one's really important in the first weeks of life and here's why. And here's what I've seen in my practice. And here's why I'm not worried. And often that's persuasive, but a pediatrician was telling me a story about a mother who came back and said, no, I'm concerned. I saw this black box labeling. I understand it has this particular complication. Rather than telling that mother she's wrong, because she's not, those things exist, but they exist for a different setting and for different patients. They exist for IV use, they exist after accidents, and there's warnings about adults, not babies.

• 47:57Speaker 04

  But she's not wrong. She read that correctly. And rather than the pediatrician saying, "You're wrong, that's not true for newborns." It was great because he was able to congratulate her on how seriously she's taken this, how much reading she's done, how she's really taking motherhood seriously and trying to do the best job she can. And from that, he offered her additional information and allow her to really feel empowered to grow as a parent, to make the decisions. But that takes a lot of craftsmanship in terms of patience and really acknowledging, we're not little sponges who soak up misinformation and just act on it. Right? We are processing information, we are gathering information from as many sources as we can. We're trying to make the best decisions we can. And I think if we start with that, there's the possibility of saying,

• 48:41Speaker 04

  "How did you come to see it this way? And what can I add from my experience that can maybe bridge that to take us both to a new place?" And that can be really powerful.

• 48:50Speaker 00

  Yeah, I think that's so helpful, that framing. My last question for you is, one of the things I often think about is, how do we stay hopeful when the stakes feel so high, especially in this moment in time? What is giving you hope?

• 49:06Speaker 04

  I'm encouraging people in my life to really think about how they spend their energies. And so many things pulling our energies into anxiety and to fear on all fronts. And I think there's an opportunity to say, "I'm going to preserve this piece of energy for something I really need to invest it in strategically." I find myself that those investments tend to be in other places. It's in my students, it's in people in my community, it's in the people who need supports, and that's a good return on my investment for those energies. And I think often those are generative. I think often about the early days of COVID, and there was so much fear and so much anxiety and so much that was unknown. We also saw beautiful gifts of generosity, of people dropping off groceries for their neighbors,

• 49:50Speaker 04

  of people making sure the seniors in their community were cared for when they really couldn't leave their homes and feel safe. We saw people being generous. We saw people volunteering for clinical trials for new vaccines in ways that represent to me like the most selflessness to put yourself into. A trial because you want to be part of solving a problem. We saw these kinds of moments and it's easy to overlook them as small because there's so many things that are big and loud. But I think that finding those opportunities to make small changes can be really powerful and empowering to others. In contrast to, I think, all of the places where it's easy to feel frustrated, disempowered, and hopeless about where we're going. And I think keeping an eye on that and being at least strategic about your own wellbeing

• 50:35Speaker 04

  can also make it possible for you to show up for people who might need you later.

• 50:40Speaker 00

  Well, I am so grateful to you for your work and for this conversation. You've given me some more hope, at least today. So, thank you so much.

• 50:50Speaker 04

  Thanks again for inviting me.

• 50:55Speaker 00

  And that's it for today's episode. Thanks so much for listening. TED Health is a podcast from TED. And I'd love to hear your thoughts about this episode. Send me a message on Instagram, @shoshanaMD. This episode was produced by me, Shoshana Ungerleiter, and Jess Shane, edited by Alejandro Salazar, and fact-checked by Vanessa Garcia-Woodworth. Special thanks to Maria Lages, Farah DeGrange, Daniela Balarezzo, Constanza Gallardo, Tansika Sangmarniwong, and Roxanne Highlash.

• 51:32Chris Duffy?

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• 52:21Speaker 01

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