The Infodemic — and the Scientists Fighting Against It | Jessica Malaty Rivera | TED

Whitney Pennington Rodgers: Hi, Jessica. And hello, everyone. It is so exciting to be able to sit here with you for this very first session at TEDNext, and to talk about leadership in a way that I think will be really meaningful for all of us here. And maybe that's a really great place to start in this session called Lead. Could you tell us how you define the term "leadership," especially as it relates to your work in public health and infectious disease epidemiology? Jessica Malaty Rivera: Yeah. Thank you so much for having me. I am so excited to be here in this room with all of you. Leadership isn't always a word that is used necessarily in public health or epidemiology, but it probably has been much more in the last several years as we've just experienced with the pandemic. And one thing that I always saw that was needed and lacking, and a huge gap in the training that I got, was making it make sense to people. And that was my opportunity to lead. That was my opportunity to say, "How can we connect people to this work?"

It's very siloed. It's very separate. And if we're talking about things that influence people's decision making and risk budgets and relationships, and how they build community, how can I step in and bridge the gap between academia, fancy institutions and the public that it's intending to serve? WPR: And, you know, it seems like there really is no truer test of leadership than in moments where you're doing it in times of unfavorability. And we know right now that public health and science is being questioned -- especially in the United States, but abroad. And so I'm interested to hear how you think about courageous leadership in times where your work, the very foundation of what you're doing, is unsupported, and in some cases, even under attack. JMR: Yeah. A potentially unpopular opinion is I do think science is political because we need good science to inform our politics. We need data to inform the policies that make decisions and make systems available to our public.

And what the difference is, though, is that it shouldn't be politicized. And so what courageous leadership, what being bold in that space has looked like for me, is saying that and connecting with lawmakers, and connecting with advocacy groups, and even doing a lot of that work myself to make that connection more clear. The more siloed we are when it comes to science and policy, the more opportunity there is for really dangerous mistruths and false claims and conspiracies to fill that gap. And so if we're not using the language of science and translating it so that people who are making these laws and policies understand them, and the people who are using their votes and voices to elect them, then we're missing an opportunity to really make sure that everybody is represented in these science policies. WPR: And I think -- to sort of piggyback on what you’re just saying here -- you have stood at the center of this tension of communicating these complex, unpopular truths in what can feel like a very emotionally charged environment.

How do you practice care and courage and leading in moments where it feels like the political and personal stakes are really high for people in your audience? JMR: Yeah, it's not easy. You know, I think that when I look back in the last several years, the good outweighs the bad. But speaking truth, uncomfortable truth for some people, has come at great cost to myself, my safety, my family. I wouldn't go back and not do it, but I'd be remiss if I didn't include the fact that we're living in some pretty dangerous times where we're relitigating established truth, and a way that I have sought groundedness, a way that I have continued, is to remind myself of that why, of the purpose that is my children who inspired me to do that work. And in finding solidarity with other scientists who are passionate about making science make sense and informing people, so that ... To me, it's tools in a toolkit.

I don't want to dumb anything down for anybody. I want to elevate people's literacy in science and complex things. I'm not expecting people to remember all the things that I have to remember about biology and immunology. That's asking too much. But I do think that these are important tools for people to have to navigate really dangerous information ecosystems right now. WPR: And I think there's a lesson there, not in just how you can consume this information and think about it, but also as a leader. And I'd love to hear more about how you actually do this because of course, you're doing this from the space of public health, but all of us are sort of navigating what feels like a really divisive moment. And so how do you decide what is a great place for you to speak up? When is it better for you to be quiet? When is it good for you to take a stand? How do you make those decisions? JMR: Yeah. I got into public health because at the core of public health is altruism. It is a desire to reduce harm, to prevent disease, to increase people's opportunity for long life and thriving in that long life.

And so my red line is when information, specifically harmful health information, challenges or jeopardizes those things. And I do think that, you know, when we're experiencing public health emergencies, we're kind of dealing with two outbreaks. We're dealing with an outbreak of a pathogen and an outbreak of information. And information today is not neutral. And we need to recognize that that lack of neutrality means that that is probably an accelerating driver of that epidemic -- and it often is. And how do we address both? We sometimes get a little myopic with public health and just think about the one threat. And so I do think that having this big picture view of tandem outbreaks is the way we go forward with this. It's the way for me to say, I can't just think about all the interventions that we need to have -- I need to talk about who doesn't understand this and what are they feeling about these things?

Are they scared? Are they feeling forgotten? Have they been hurt by the system in the past? So I'm going to work a little bit extra hard to regain their trust. I think a lot about the difference of trust and trustworthiness. Am I even worthy of the trust of the people I'm speaking to, to say these things, instead of asking them, "Just trust me, I'm a scientist. Trust me, I'm an expert." We're now in a different world where trust and expertise [are] really subjective. And people are now choosing to, you know, abandon expertise for the sake of things that are more familiar, things that they identify with. And so I do a lot of that ground level listening and hearing people to understand this is not a one-size-fits-all type of work. It really is hypertailored and hyperfocused on individuals. WPR: And, you know, this makes me think about the importance of storytelling. And I have something that you've said before, that data alone doesn't change minds.

Stories do. And so how do you use storytelling as a tool for courage and leading when you're thinking about people potentially not having trust in some of the actual data or science behind some of what you're saying? JMR: I think about this so much because ... There’s a phrase: “Plural of anecdote is not data.” It's true. But anecdotes do have a significant influence on people's decision making, and so we can't ignore the fact that an individual story can go a really long way in helping people connect science to science decision making. And I do that a lot myself. I think it's a slower process, which may not be as efficient for many folks in my space, but I lead with that. I don't walk away from the many identities that I have. On top of being a scientist and a sense maker, I'm a mom to three young kids, and I use my experience of parenting them and making decisions about their health as a way to show my example, as a way to show any doubts that I had, any concerns that I had.

And I would be lying if I didn't recognize the fact that I had postpartum anxiety, and that influenced a lot of the decisions that I made. It didn't cause me to not make some choices that I fully support, but the thought process, I shared that very, very transparently, and I think that it can go a long way when it comes to connecting the humanity of the people who are trained and experts to the people that they're trying to serve. WPR: I think we often hear that public health has a messaging problem. And I think you're speaking to some of the ways that you think about how to message things. Do you think that that's what it is? Or is there something bigger happening there beyond just the way things are packaged? JMR: I think that there is definitely a messaging problem. And I would probably say it's because of one specific thing. It's often considered an afterthought. You know, there are these meaningless -- I say meaningless now -- sentences that we say in public health. "Vaccines work, vaccines save lives." I don't even know if I want to say those sentences anymore because it’s really not a vaccine -- it’s a vaccination.

And that's just the word nerd in me making the distinction. But if you think about the difference between a vaccine and a vaccination, what connects those things? A message, a trusted message from a trusted messenger. And so how do we turn those vaccines into vaccinations? It's communicating. It's making sure that the data from those clinical trials makes sense. It's making sure that the process of getting to these interventions is transparent and clear, and without conflicts of interest, and without all the things that are constantly scrutinized. And so how do I do that? I translate. I take my time. It's laborious, but there's not a lot of investment in this. We spend billions of dollars on the R&D, necessary billions, truly, to get these lifesaving interventions. But then we just think that the messages are going to exist alongside [them]. And it takes a special kind of training and a special kind of mind to know that it's not going to just be accepted, and that we are dealing with a very diverse world with a very, very, you know, difficult experience.

Now behind anybody who’s lived in the last five years, trust should not be assumed. Trust is a determinant of people's decision making and their health. So if we're not investing in communications, then we're just going to be creating these tools that will collect dust and not be used. WPR: It seems like trust -- definitely in your space, but I think in so many areas -- we're seeing that with the rise of misinformation, that there is this sort of fracture in the way people trust public figures, they trust voices that previously wouldn't have been trusted. How do you tackle rebuilding that and repairing what might have been damaged? JMR: Yeah, it's a long game. You know, I think it takes a lot less time to break trust than it does to build it and to repair it. I know the work of repair as a mom. I'm constantly doing that and modeling it with my children. And I keep thinking about the bigger picture of, you know, when there's something broken, the time it takes to mend that.

There's a lot that needs to be done to recognize the deep hurt and trauma of the last five years. And I think that that's where we look at science as needing to be a lot more multidisciplinary. It's not just the infectious disease people at the helm, right? It needs to be the social scientists and the psychologists, and the therapists even, the politicians and the strategists all kind of together thinking about what does this road to regaining trust look like. And what keeps me up a little bit at night is knowing that myself and the scientific community [are] not the only one aware of that. You know, we're seeing like a tug of war over trust, and words are losing their meaning, including the word "trust." Like what is trusted? What is “evidence-based?” What is “gold standard?” And so part of the work that I feel really compelled to do is on exposing, you know, with deep transparency, all of the processes that go behind science.

I mean, “exposing” is maybe an intense word, but I say that because people have felt left out of the process and just expected to follow suit, to just obey. And I don't think that that's the right way. I do think that there is a place for expertise, and experts should definitely be influencing a lot of these decisions and recommendations. But when it comes to repair, a lot of it is going to go back to the basics of saying, "I don't know." "I don't know yet." And that makes a lot of scientists squirm. You know, the lack of certainty is not a comfortable place. But if you think about it, the lack of certainty is why we all are scientists, right? It's me wanting to find an answer to an unknown, or to something that I don't fully know is connected to something else. So how do we go back to the basics of the scientific method, of a hypothesis, or of a process of getting to that conclusion and not coming in with so much certainty and binary thinking? WPR: I think when you think about young scientists who are coming up, and I think -- I'll even take a step back because so much of what you're saying is so relevant to others as well.

But when you think about young people who are coming up and looking to communicate ideas, what makes you feel good about where things might be headed and the direction that they might be taking and how they approach these things? JMR: I mean, the role of science communicator was not something that people were familiar with many years ago. And even the word "infodemic" or "infodemiology" was a word that was not in a lot of people's lexicon. And it now is. And that excites me, because I do think that what we need to do is train a generation of scientists who can communicate that science, because their work is incomplete if it's just sitting behind closed doors at fancy institutions. It's not actually a tool in somebody's toolkit unless somebody can repeat that message to somebody sitting next to them at the dinner table. And that's why I feel so passionate about the work that I do, that I somehow became a personal scientist to so many people who then could refer to me by first name and say, "Well, I heard this from Jessica and she explained it this way," these repeatable messages, this generation, hopefully, of creating science communicators in the whole community.

And not everybody has to have the same training, but that they can repeat these messages so that everybody can understand, that, to me, makes me feel hopeful about the future, despite the fraught information ecosystem that we're living in. WPR: I think that's beautiful. And when you have these conversations with people who maybe feel concerned about how they can break through and make a difference, what are some of the ways in which you encourage them to keep going and to do this work? Yeah. The good outweighs the bad. I have to keep reminding myself that, yes, there's violence and death threats and antagonism and a lot of scary things. Oftentimes, we're dealing with keyboard warriors and people who maybe are not as brave as they may sound on the internet. I'm not at all downplaying real threats, but I have to keep reminding myself that at the end of the day, we have evidence and data to back up the things that we say, with that caveat. That's different than what you're dealing with on the other side.

And I think speaking that truth courageously, repeatedly has shown to be beneficial because of what we see. What's interesting about public health is a lot of times what we see is what we don't see. The interventions are invisible in that sense, and they're a victim of their own success. Because when people are doing well, public health is working, and that's what we want. We don't want people dying in mass and getting sick in mass. And so how do we make that invisible work visible? It's by this type of echoing and communicating and inviting more people into that process. Because if we just assume that it exists and we're not talking about it, that’s when the defunding happens. That’s when the devaluation happens. That's when the deprioritization of it happens. And that's kind of what got us into the terrible position we were in in 2020. WPR: I'd love to know as we're winding down our conversation, just how this -- what this looks like for you. How does this show up in practice for you? How do you find the courage to keep going and keep doing this work?

JMR: Yeah, I think about all the hats that I wear. I think about the fact that I'm not just an epidemiologist and a science communicator. I'm a mom. I'm a first-generation American. I carry all these identities with me. And I think that's why I am trusted by some folks. And I think a lot about the times that I've had to speak up, when it has felt scary to speak up, whether it's in opposition to an administration or to a specific politician, or to a specific person who is making very dangerous, harmful claims. My work requires me to see a lot of dark things. You know, the dismantling of public health systems, really dangerous health misinformation. Even what we're witnessing over the world. You know, I very much have spoken out a lot about what's been happening in Gaza, as it is connected to public health, it is connected to children. I am a mom with kids, very young. All these things are connected, and I speak about these things in a connected way, because I remember a few words that really ground me.

And this was really reinforced, most recently, [when] I was in Rwanda with UNICEF visiting a field site. Rwanda is just 30 years past the genocide. Something that I witnessed 20 years ago, when I was there, 10 years after the genocide, and I remember thinking, how can there be hope here? How can there be repair? And I saw it, and I remembered the question that I asked myself, like, why do I do what I do? What is the thing that I'm good at? And I really, genuinely think I'm good at sense making. I'm good at making hard, complicated, uncomfortable things make sense to different types of people. And so because of that, it gives me my why, and my why is that speaking up about science, about injustice, about the connection of those two things is always right. It's always worth it. And so that is how I keep reminding myself of the work that I do, the why that I do it because it's really important to me.

And I've seen the fruitfulness of it all. WPR: That's beautiful. And it feels like that's something that maybe all of us can practice. Thank you so much for this conversation and for being here with us today. JMR: Thank you, Whitney. Thanks, everyone. (Applause)