Welcome to Well Beyond Medicine, the world's top-ranked children's health podcast, produced by Nemours Children's Health. Subscribe on any platform at NemoursWellBeyond.org or find us on YouTube. Each week, we'll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor's office. I'm your host, Carol Vassar, and now that you're here, let's go. Let's go. Well beyond medicine. We're here at Health, and I'm joined by Jessica Malade Rivera. Jessica is an infectious disease epidemiologist with over 20 years of experience, senior science communication advisor for the DeBeaumont Foundation. She's also in school to get that. It's not a PhD in public health. What is it? It's a doctorate in public health, a DRPH. DRPH. And she's working at the Digital Health Accelerator at Boston Children's. Welcome to the podcast. Thanks for having me. You've said this. So science is unfinished until it is communicated. What does that mean to you? And how has that philosophy shaped the way you approach your work in public health, which is lifelong? It really is. I feel so strongly about that sentiment, which unfortunately I did not come up with myself. Sir Mark Walpert came up with the statement of science isn't finished until it's communicated. And essentially is saying that the job of scientists doesn't end behind closed doors in laboratories or even in fancy papers that are intended for high impact journals. For science to be a tool in people's toolkits and information to make informed choices, it needs to be translated. It needs to make sense to people, especially now in a very, very fraught information ecosystem with digital media and social media kind of creating a lot of noise, making it very difficult for people to understand what science is. There seems to be almost like a battle for science and who gets to claim it. And I've got the great job of sensemaking and translating it so that people understand it and make informed choices from it. That's a skill. Not everyone has that skill, especially in the scientific world. That's right. You've helped to popularize a term infodemic, which refers to the spread of too much or some misleading information during a health crisis. How does studying information and the way we study disease help us understand today's public health challenges? Yeah, not necessarily a new word. It's been a word that's been around for a couple decades, but not as common as I would like it to be. And so I'm trying to, like you said, make it more popular so people understand that there are non-disease related trends that can actually harm people's health. And one of those things is an infodemic, which oftentimes happens in tandem with an epidemic or in the most recent history, a pandemic. Those driving factors can make health-based decision-making much more scary, much more dangerous, and have very, very long-lasting impacts. Mis and disinformation spread much faster than evidence-based science. But infodemics is not necessarily just about mis and disinformation. It's a fire hose of information, which makes even a trained person feel a little bit overwhelmed by how to navigate all that information to know what is true and trustworthy from what is false and untrustworthy. And we're doing a lot on understanding those intersections of biological threats and information threats that both kind of coincide and make public health experiences, emergencies, events that much more dangerous for the public. We're in an infodemic, I would assume right now. 100%. What do we need to know? That information is not neutral and you need to really check sources. I ask people to do very basic things. It's really not inventing the wheel again. It's asking who, what, when, where and why about any information that you're accessing. Sometimes it's just literally checking when was this published. Sometimes it's old news. Sometimes it's checking who published it. Do they have conflicts of interest? It's helping people do that own kind of investigation, the investigation that I do as an epidemiologist all the time. You know, epidemiologists ask who, what, when, or why about a disease and how it affects people. Infodemiology kind of asks those same questions, but about the information. And I'm helping people do that so that they can be better consumers of information. Journalism does the same thing, but we don't necessarily trust journalists these days. Are people trusting public health? Are they trusting epidemiologists such as yourself who are evidence-based believers? That's such a good question. And I wish I had a simple answer to it. I think it depends is the answer, which is a very epidemiology answer. It depends because we are in a battle right now to regain trust. The other day was looking at the CDC website and notice that the about page had been updated. And on the about page were 12 mentions of the word trust. The only reason why I counted is because I study trust and I want to understand how trust is a determinant of health. It is a driving force in people's health decision making. And I think that there is a tug of war that's happening. The evidence-based side on one side, the non-evidence-based wellness kind of alternative science views on the other. And people are stuck in the middle and people are trying to understand why is it bad to want to make America healthy again? And that's the wrong question. I do want to make America healthy again, but we have to do it the right way. And so I think we're right now seeing this tug of war happening with who's trustworthy, who's evidence-based, what even is evidence? And unfortunately, like that's what I mean about information not being neutral. People don't understand what's behind the information a lot of times. Do people understand that they need to take those extra steps to look at how old an article is? Who wrote the article? What kind of information was used to write the article? Or do we need to kind of start from scratch and say, all right, here's how you know you can trust this information? Shame never changed anybody's mind. and screaming at somebody rarely does too. And so there's a lot of repetition, a lot of going back to the basics and the work that I do. You have to do this work with empathy and patience. Otherwise, you're just going to be creating more extremists and more people who are actually fleeing from science or even fleeing from wellness, the alternative science, because they don't feel safe. They don't feel like they can ask questions. They don't feel like they can come to the table with uncertainty. And I am saying uncertainty is the most welcome thing in science. It is the driving factor of the scientific method. We don know something and then we do experiments to find the answer to it So I want people to feel welcome with the uncertainty and the freedom to ask for navigational supports the freedom to say I don know how to find a trusted message I don have very good scientific or even media literacy How can I get those skills I try to do that the best I can so that I'm not creating more people who are afraid of this information. You have said you can do more harm than good when you focus only on debunking myths. And debunking a myth is a big thing that I try to do. How can we create more harm when we're actually trying to create good? Yeah. The reason why I said that is because I think a lot of times science communication can be trivialized to just myth busting and debunking. OK. When really, if we did that, if you if you spend all your time doing that, I wouldn't sleep because there's just always something to debunk. There's always missing disinformation. There's always going to be false claims and circulating narratives that are not true. but they're not all equally harmful. And I think that that's where the discernment comes in of understanding like what has a potential to be viral or what has the potential to actually influence people's behavior? Is it showing up in phone calls to the ER? Is it showing up in visits to the pediatrician's office? Those are kind of the indicators. And that's my epi hat coming in of when information needs that. Otherwise we would just be honestly, sometimes inadvertently amplifying missing disinformation. I mean, one of the tactics of science communication is called a truth sandwich, where you lead with the truth, you debunk in the middle, and you finish with the truth, because the focus should be the truth. If we focus too much on the problem, it sometimes puts a little bit more oxygen into the flame. You talked about things going viral. You went viral, didn't you? Starting in 2020, the pandemic, I presume, you started posting to Instagram, and your friends are like, hey, this is great stuff. People should know this. They were sharing it and you became sort of a very well-known trusted voice for evidence-based information in the middle of a pandemic. Talk about what that experience taught you, what the being in the eye of the storm really indicated to you about people and trust, which you study and what people really need from science communication. Yeah, it taught me a lot. I think one of the biggest lessons it taught me is that people are hungry for this information. when I would do weekend Q&A's, for instance, I would get thousands of questions, very earnest questions from people who are like, I don't feel like I can come to my doctor with this laundry list of questions and concerns. But I feel like you're my phone a friend, but you're like my phone an epi. And you can talk to me like a normal person without making me feel bad. And I realized, my gosh, people just need somebody to speak to them like a human or like a fellow mom or like a fellow person who was also bummed that we were having to stay at home all the time. All those things kind of made me more relatable to folks. And I loved that human connection. I felt connected to my audience in that way. It also taught me that I'm very sensitive because it came at a huge cost. I mean, I'd be, you know, lying if I said it was all good. I definitely think the good outweighs the bad, but the bad was really bad. to be a public face, pro science, pro vaccine, pro public health mitigation efforts, I got a lot of hate, I got a lot of threats, I got a lot of vitriol. And I think it taught me that being a public figure requires some tough skin, which I had to grow in the last five years. And it's kind of changed my relationship with being in front of the camera a little bit. But I also know that I've seen transformation that I could have never even anticipated. A lot of people say, don't focus on the extremes or the anti-vaxxers. Focus on that movable middle, the people who are kind of right in the neutral spot. And I have mostly, but I've seen people from the extreme change their mind because it finally clicked. I made it made sense to them. I kind of dispelled the things that were kind of causing them to be fear-based and caught in cycles of conspiracy. and the greatest pride I could ever have of being part of those types of transformations. I didn't do it for myself. I did it because that one person changing their mind, it's changing the community one person at a time. You persisted. I did. Yeah. Good for you. Thanks. Thanks. Your recent writing, you talk about infodemic resilience as society's ability to withstand false or misleading health information. You came through that storm in 2020, 2021. 21, it sounds like, what does building that resilience look like? When we're talking about schools, we're talking about communities, we're talking about clinical settings, or just the community at large? Yeah, we talk a lot about resilience for a lot of things, climate change, another pandemic, preparedness. But I don't think people talk enough about resilience for infodemics. And I really think that especially right now, where information is not neutral, and without sounding like a Luddite, I think AI is changing a lot of things for people when it comes to how they can exist in digital landscapes. Resilience to fake news, resilience to deep fakes, resilience to myths and disinformation, or even just too much information is a skill that I think should be taught from the very earliest stage. And I see this as a mom of three kids who are already experiencing hearing things at school or reading things in a headline or in passing. And I want them to have those types of skills of saying, is that trustworthy? Is that a reliable source? Is the thing that I just heard even true so that they don't grow up misled? I think that that kind of indoctrination of skills needs to happen really, really young. Otherwise, we're going to be setting ourselves up for many more infodemics that are going to cause a lot of harm. Is creating that resistance, building that resistance either for yourself or within your family, within your kids is part of that actually putting down the phone, maybe taking some cues from the Luddites in your life, putting down that phone, closing that computer and leaving the world of social media and online. 100%. I mean, I don't want to throw the baby out with the bathwater here and say it's all bad. I definitely think there is a lot of good that can happen. I've seen that good happen. But I do think that we need to have a much healthier relationship with the volume of content that we're all consuming and the speed at which we're consuming it. A lot of people don't get past the lead in an article because the lead and the title is just as much information as you need for a very viral social media post. And I am speaking even to newsrooms here. You know any of the major newspapers can basically tell a whole story in a square right headline lead maybe a fact or two written in small text Is it really the whole story Right Exactly And so I want my kids to have better reading comprehension skills than reading two sentences and thinking they have the whole thing I guess there's a time and place for a TLDR, but the TLDR is not how you become an informed person on this planet. Let's take that a step further. Let's talk about the algorithms. The algorithms are designed to kind of reward seemingly outrage. Oh, yeah. when you're putting out information that really isn't by design, generally speaking, designed to create outrage. How can we fight back against those algorithms? Can we? I struggle with this a lot because I know that the content that does well, that gets the clicks and the eyeballs is the one that elicits strong emotions. It's the one that gets people to either feel indignant, outraged, wanting to then scream on the internet themselves and post with an all caps mention of what's happening. I've been victim of that too. And I don't like what it does to my nervous system. I also don't like what it does to just my experience as a person and a person on the internet. And so I do think that fighting back will probably look like not just being reactive, being proactive. A lot of times we talk about things like pre-bunking or information inoculation. That's almost kind of anticipating what you might see that may be the rage bait, how can we get ahead of that message and say, you know what? And we did that a lot, actually, most recently with the Maha report and with the Tylenol news. We knew it was coming. And so we did a lot of front loading on the internet and saying, hey, you're probably going to be hearing headlines that make these types of correlations and causal claims. Here's how you can anticipate those articles sounding. Here's how you can brace for impact. Here's how you can interpret them better. And I think it's going to require a lot more of that instead of being reactive. Related. You've talked about equipping leaders. It sounds like that pre-information information was very helpful in the instance you cited. How can we equip and train local health workers, clinicians, even influencers to be those credible messengers? Do you have a success story in that area? There's a lot of creators online who are doing this work very successfully, and I love to see it. This cannot be just my responsibility or the responsibility of a handful of people. It requires all hands on deck. And I think having an all hands on deck approach to saying, look, you may not have been trained in science communication. You may have never taken a class in science communication. You may not have felt comfortable even doing public facing communications. But if you're able to make science make sense, translate it into easy, accessible, emotionally intelligent, culturally competent information, consider doing that on the Internet. Consider doing that in your communities. Consider doing that on a sub stack, on Instagram, on a podcast. I think that we have to be flooding the zone with people who speak the language of science in a way that makes sense to wide audiences. Otherwise, we're going to lose the bottle for information. I mean, I sometimes feel overwhelmed that we are swimming upstream a bit, but I'm trying to invite more people in to be like, hey, like you don't have to be 20 years in the game and in science communication to do this job. Learn a few skills, practice and perhaps collaborate with other creators who are doing it so that you can get better and better. But it has to be a group project, a group effort. I love your communication style. It's empathetic. It's honest. As you try to address this infodemic, and it sounds like this is a longer haul than just, OK, we have this negative post or this negative podcast that's out there. It's going to hit immediately. You're in for the long haul. How do you maintain that compassion when you're facing misinformation and what you alluded to earlier with your experience in 2020 during the pandemic? of outright hostility. Yeah. It takes knowing when to take a break and focusing on mental health and making sure that you're okay. I mean, I've had to scale back a bit just because of the toll it takes. I also think knowing, thinking back on the benefits and the good that outweighs the bad, that's what keeps me going. Meeting people in real life who've said that they've been influenced and impacted by the work that I do, that keeps me going. Moments like this, talking about it, that keeps me going. Knowing that I have three young kids who are going to be growing up in a world in which, I mean, I feel like I'm the last generation that was pretty analog and have seen so many advancement in technology, which I'm very much and beholden to lots of things now, lots of technology. But if my kids whole life in the future is going to be even more digital, I don't want them to not have these tools and toolkits. So I want to be a better mom in that sense of training them to have those skills. And the friends that I have and their kids too, we're raising a whole generation of people who are going to have to grow up in this system. So I can't stop. And so I'm going to keep going because of my kids. The proliferation of AI. We're at a health conference. AI is the talk of the town has been at least for the past couple of years since I've been coming to health. Does that worry you in the communication world, especially at the speed at which it is proliferating. Yeah. I mean, I think it's helpful to not consider AI as a monolith because it can be used for good too. And we're seeing it at a conference like health, we're seeing AI be used for so many transformative things in diagnostics, therapeutics, and even information processing. But we also have to approach very cautiously. I think that not just the bots are the concern here. I told a colleague the other day, I'm fully anticipating reports of malpractice from a provider who cited a fictitious or hallucinated clinical trial. I mean, it's not outside of the realm of possibility that harms, measurable harms can happen because of an over reliance on AI. And so I am approaching it cautiously, but with cautious optimism, too. I think that there is a lot of reform that needs to happen, especially from a environmental standpoint. And as a public health practitioner, that intersection is very, very clear, knowing that environmental harms are a driving factor in public health emergencies. And so I struggle a bit knowing that it is not a sustainable or even close to green system yet. Perhaps it can get that way soon, I hope. But I do think that we are going to be existing with AI from now on. I don't think it's going anywhere. And so how can we use it for good? I think through innovations like places like here, I think even thinking about it as a tool for creating really evidence-based content, so long as you're fact-checking it, making sure that you're citing actual evidence behind it and not saying, oh, well, ChatGPT made this post for me based on things that sound science There a book that I often refer to called How Charts Lie And it a book that has taught me a lot I do a lot of work in data and data visualization And just knowing that a chart in and of itself is a reliable thing because it looks like a smart person made it, right? A chart is, it seems very sophisticated. If you have the skills on Tableau or even ChatGPT, you can make something look like science, right? And the sophistication that is happening from the bad actors will be harder to distinguish between good science, evidence-based science, AI, hallucinated science, and stuff that is actually reliable. And I think because of that, this type of work of training people on how to discern who made it, how it was made, is more timely than ever. Having that human element seems like it has to be right in there. 10 years from now, will we still be in an infodemic, do you think? I do. Unfortunately, I do think that what's happening right now with public health, capital P, capital H as a whole, between budget cuts, between major shakeups in the U.S. government and how that affects global health, too, because of policies and budgets that have disappeared from those policies. I think course correcting is going to take many, many years. I think that what we're seeing is setting the foundation for some pretty rough years in public health. And I think when we have rough years in public health, infodemics increase. What do you think will be the signs that we're finally turning it around and coming out of an infodemic? And we're talking years down the line. So just want your educated estimation on that. Yeah, it's a fair question. And if I were to guess, I would assume that we're not re-litigating established science, right, on the public forum and on like stages that used to historically be evidence-based, right? I think that, you know, science is iterative. Science needs to evolve. But there are some things that we have settled. And I think when we stop seeing the re-litigation of things that have out far, far proven that benefits outweigh harms or risks, hopefully will be out of an infodemic in that sense. But I don't necessarily think that infodemics are fully eradicatable. That's a word, you know. It is now. Yeah, right. And I say that because they've existed since the beginning of time. There's always going to be an alternative take. There's always going to be a different interpretation of something. I mean, going back to the history of vaccines, when the first vaccines were being introduced to prevent smallpox, people thought, well, if you take that vaccine, you'll turn into a cow because it was derived from cowpox. I don't think fringe alternative snake oil is going anywhere, but I hope like what we talked about earlier, resilience to those types of trends and awareness of that type of expecting those things to happen in tandem should be more ubiquitous. And I say that because I remember early in the pandemic, even folks who were high up in some of these government institutions being like, well, I wish we had been more aware that we would have so much resistance. And many of us who've been studying trust and misand disinformation were like, are you kidding? Like we knew this would happen from the moment SARS-CoV-2 was first identified. We anticipated the false claims, the racist claims, the conspiracies, and then the misinformation. And I think it even reflected itself in how we prioritize the funding. We spent billions of dollars, rightly so, to develop vaccines in Operation Warp Speed. We didn't spend any money on a comms plan to turn those vaccines into vaccinations, because at the end of the day, that's what saves lives is a vaccination, meaning somebody got it. And that happens when trust and messages that are trustworthy are communicated to the person receiving the vaccination. And so we have to be thinking bigger about future public health emergencies, which will happen. Unfortunately, we will have more pandemics. How do we get people to anticipate and prepare for the infodemic that will absolutely happen at the same time? We definitely have to think big. But I in my final question, I want to ask you think small, what can I do? What can one person do to chip away if it's only in a small way at that infodemic? Yeah. I mean, I do think that each person is responsible for the information that they share. And I think being more judicious about what you share and why you're sharing it and asking yourself all those questions before you share it, take a pause, take a beat before you click post is going to be slowly measurable change that can happen. I mean, so many times misinformation is not disinformation, right? Disinformation intends to harm, right? Misinformation is sometimes benign or the person who's sharing it doesn't intend to harm. But if everybody just took five extra seconds to pause before they post it, I think we'd probably see safer information ecosystems. There you go, folks. Think before you post. Yeah. Jessica Malati Rivera, thank you so much for being here on the Nemours Well Beyond Medicine podcast. Thanks for having me. This is great. Well beyond medicine. The word infidemic is definitely a word on the rise. It was coined in 2003 by journalist David Rathkoff as a blend of the words information and pandemic in reference to the SARS outbreak happening back then. It really came into prominence during the COVID-19 pandemic and has been used extensively by the World Health Organization ever since. It's even found in the Oxford English Dictionary, but has yet to be recognized by Merriam-Webster. Thanks to Jessica Malati-Rivera for joining us at Health in Las Vegas, for our word of the day, and for all the great info she shared about combating the infidemic by accurately translating scientific language and evidence-based information for general consumption. Our health series comes to a conclusion with our next episode, where we look at the food as medicine roadmap of the Academy of Nutrition and Dietetics with Dr. Allison Stiber. Don't forget, you can listen to any episode of the podcast on your favorite podcast app and smart speaker, the Nemours YouTube channel, and on our website, nemourswellbeyond.org. Visit there to leave a podcast episode idea, a review, or subscribe to the podcast along with our monthly e-newsletter. Again, that address is NemoursWellBeyond.org. Our production team for this episode includes Susan Masucci, Lauren Tata, Cheryl Munn, and Alex Wall. Video production by Sebastian Riella and Britt Moore. Audio production by Steve Savino and yours truly. On-site production assistance provided by Robbie Dorias and his team from Health. and we are thankful for it. I'm Carol Vassar. Thank you for listening. Until next time, remember, we can change children's health for good. Well beyond medicine.
