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Public Health Matters Video: The Difference Between Misinformation and Disinformation, and How Information Can Inform Evidence-Based Decisions

Tune into this episode of “Public Health Matters” to learn about the Unbiased Science podcast and how guest Jessica Steier, DrPH, PMP, aims to combat misinformation and disinformation, encouraging listeners to make evidence-based decisions.

In this episode, host Dr. Christina Madison interviews Jessica Steier, DrPH, PMP, CEO of Vital Statistics Consulting, and the founder and CEO of Unbiased Science, on her journey in public health and entrepreneurship. In a period of misinformation and disinformation, both Madison and Steier discuss the importance of creating informed, evidence-based decisions within health care.

Key Topics Discussed:

  • Dr. Jessica Steier discusses her love for data and information and shares her unconventional journey within public health to entrepreneurship.
  • The Unbiased Science podcast, its origin as a source of factual COVID-19 information, what its goal is, and how it has evolved and gained a following.
  • The differences between misinformation and disinformation, what actions can be made to combat them, and how to get educated.
  • How social media, particularly TikTok, can be helpful in shedding light in previously underdiscussed issues (eg, women’s pain during IUD insertion) but also harmful in spreading misinformation.

Christina A. Madison, PharmD, FCCP, AAHIVP: Hello everyone, and welcome to another episode of Public Health Matters, part of Pharmacy Times Pharmacy Focus podcast series. I'm your host, Dr. Christina Madison, also known as the public health pharmacist. I'm very excited to bring another incredible guest to the table, someone who I am so excited to bring in today because I have been fangirling [over her] for a long time, and then, as it happens, I would say the universe answered my wishes and I was lucky enough to get connected with this incredible human earlier this year. I just feel like we've known each other for years. And so with that, I'm going to let Dr. Jessica Steier introduce herself...but I do want to give you your flowers, because you earned that and you are an incredible scientific communicator. I'm just super excited to have you here today.

Jessica Steier, DrPH, PMP: Oh my gosh, I am so excited to be here, and I guess it's a mutual fangirling because as you know, I'm a huge fan of yours and all the amazing work that you're doing, and [I'm] just happy that you're shining a light on public health, because I feel like it's the unsung hero of the science world. So [I'm] really excited to be here.

I have a doctorate in public health—so a DrPH degree—and it's a concentration in health policy evaluation. So basically, I have training in biostatistics, epidemiology, research design, and methodology, and I use data...or I should say, I design data plans and then use data to determine whether a certain health policy, health program, or intervention of some sort actually achieved what it set out to achieve. So, did it move the needle looking at things like health quality, utilization of care, cost of care, all different types of outcomes.

Madison: I always say data is queen, and you are definitely embodying that. I would love for you to tell us a little bit about your journey, because one of the things that is unique about how you decided to utilize your degree is that you decided to go into entrepreneurship and then also start this amazing movement around dispelling mis[information] and disinformation. And in particular, you were so invaluable during the [COVID-19] pandemic because there was so much misinformation that came out during that time, and you were, like, the face of reason. And so, if you could just tell us how that came to be because obviously entrepreneurship is not for the faint of heart. And I think a lot of folks are [confused that] you have a doctorate in public health and you chose to be an entrepreneur. How did that happen?

Steier: Yeah, no, for sure. And it's funny when I think back to when I was a little girl, if you'd asked me what I wanted to be, I probably would have said veterinarian, or a doctor, or something like that. I definitely didn't think public health scientist or entrepreneur, that was not something that I was thinking. And my journey to get here was not a straight shot, it was definitely...not a direct path. And for a long time, I thought I was going to go to medical school, or law school, specialize in health law...for me, it was I always knew I had a love of numbers—math is my thing, any statistics course, calculus [course], I loved that—but I also gravitated very much to health. I think a lot of that was informed by watching my dad struggle with chronic illness. He had advanced [chronic obstructive pulmonary disease] for many years, and then later in his life had developed bladder cancer, largely—I can't say 100% causation—his smoking habit contributed to that. So I was very, very interested in things like tobacco policy and smoking cessation. And so, I basically stumbled into public health as this amorphous thing that was really broad and could allow me to combine my passion for health care, but then also the data, the math, the numbers, the statistics, and all that stuff.

So, I did a lot of different things over the years, I was working for departments of health, mainly in their policy arms, so I was at the New York City Department of Health working in tobacco control and I remember wayback one of my initial projects as an intern...New York City had implemented a parks and beaches smoking ban, and so my job as an intern, I had to go to every single park and beach in New York City and count cigarette butts...then I was in clinical academia for a little while teaching research methods, epidemiology, and biostats to physician assistant students, which was really cool. I worked at a health policy firm for a couple of years that was based outside of DC, and then I was like, this is awesome. And I was working on these really cool projects, these state and federal health policy evaluations, talking to very important people who were decision makers, and it was so cool, but the quality of life was not great. I was working...12 to 14 hour days regularly, there was no such thing as weekends off, holidays, there was really just no autonomy. And I loved the work I was doing, but it was impacting my family life. I have a husband, I have kids, and that part of my life is very, very important to me, and so I started my own thing.

Vital Statistics Consulting was formed in 2017 and it was my answer to loving public health data science, but also having my own autonomy. And as you noted, entrepreneurship is certainly not for the faint of heart, because—and this is something that we could talk more about—I'm already a workaholic, [I have] a very strong work ethic...and when it's your own thing, your own business, everything you put in, that's the only way you get out, right? So if I [weren't] working, I'm not moving things forward, and then throw in when you have people working for you, and you're responsible for their salaries...there's an added pressure. Now I'm not just dealing with myself, now this this is impacting other people's lives.

But then COVID happened, and in early 2020, I realized that...I had people coming to me all the time saying, "What is going on?" You know, it felt like the world was literally crumbling, it was science by headline...and I don't need to tell you, these preprints were coming out...there was just so much information, people didn't always know how to process it, things were being taken out of context. And so, who knew it? I couldn't predict this.

I really kind of shifted gears, and I started this scientific communication arm of my company, Unbiased Science. And I literally only thought it was going to be my mom and her friends who were tuning in and listening to this podcast that I was putting on and reading my little infographics that I was putting out on my social media channel, but it just it, you know, it grew into something, and I can't believe it.

Madison: You're modest. Can you be honest and say how many folks you are actually touching with your podcast and with your social media presence?

Steier: I still can't believe it, but across social media channels—so Instagram, Facebook, Twitter, TikTok, all the things—we have about 450,000, about half a million followers around the world, with the largest presence in the US and Canada, the whole thing is wild. And then [we have] a podcast, which is coming back for season 5 at the end of August, which has about 15,000 listens per episode. So, it's really cool. I guess the last thing I'll say before I stop rambling here is that what I love about it is that I'm reaching a very diverse audience, and I mean diverse in a lot of different ways. Diverse in that, yes, there are people who listen, who are already science-minded and just love this stuff and they crave more of the technical information, but then there are the folks who are harder to reach, and maybe are skeptical, or have questions, and are more likely to fall prey to misinformation, and so, it's a very cool opportunity to reach a lot of different types of people.

Just one [more] thing, I do want to give a shoutout. I am the face and, yes, all that good stuff, but I will say I do have an awesome team. I have to shout them out. They're working in the background but they help keep this going, so I want to credit my awesome team members as well.

Madison: Of course. And just so folks kind of understand what your topics are, I think you tend to gravitate towards things that are very much in the social construct, right? [For example], the last thing that I saw you posted about was the toxins in tampons and myth-busting around that. And then prior to that, it was [content] focused on some of the myths associated with the COVID vaccines, and then association with who's getting COVID and some of those things. And so, I just wanted to talk a little bit about how you choose some of the topics that you discuss, and why you feel like it's so important to get that messaging out.

Steier: For sure, in the very beginning, it was definitely all about COVID and [the] vaccines when they became available. But then it became really apparent that people wanted more information, and really the goal of Unbiased Science is I'm not trying to shove information down people's throats or tell them what to do. I want them to be better consumers of health and science information and to make informed, evidence-based decisions. And as a data scientist—to answer your question about how I sort of think through the topics that we cover on Unbiased—I'm sort of trained to look for patterns and trends, and so...looking into what are the questions that people are asking, what are the things that are going viral...TikTok is a good indication of what younger generations are talking about, and some of the misinformation that's going viral and really targeting them.

And so, a starting point is...here's the misinformation, here are the knowledge gaps, here are the misconceptions. Let's walk through this, right? And again, it's not a matter of telling people, "Don't be scared of tampons, you don't need to worry about the heavy metals in [them]." No, let's talk through this. Because I want to give people the respect of listening to their questions and then giving them the information. Here's why I'm saying you shouldn't be concerned about the heavy metals in tampons, so let's talk about what's in a tampon, why it's there...this study that went viral, what did it actually find?" So, really walking [people] through that nuance, because I could speak for myself, but I know a lot of people don't like that very top-down approach of someone who thinks that they're smarter than I am telling me what to do or what not to do, right? That's not going to cut it anymore, we really have to meet people where they are and address their specific concerns.

Madison: No, I completely agree with that. And it's interesting that is where you look for trends, because I do think that TikTok tends to be kind of that canary in the coal mine. When I was doing a lot of advocacy work around reproductive health and justice, it was just nuts. I was part of this roundtable discussion, and it [included people from] the Kaiser Family Foundation, folks from the Biden Administration, from [Free the Pill], all these different contraceptive advocates. One of the biggest things that came out of that conversation was that there was this massive upswell of TikTok creators telling folks not to take contraception because it was dangerous, it was causing cancer, itt was causing all of these issues. But I will say one of the things that did come out of that, because a lot of folks came and started commenting—and I don't know if you saw this recently—was that there's now a push for the medical community to really address the pain associated with IUD insertion. So yes, there was some misinformation out there, but I do think there was some good that came of it, because it was [this] massive ground swell of all these women coming out talking about how horrible [insertion is, how it was] the worst pain of their life—which, by the way, completely agree with it, that happened to me too.

Steier: Same!

Madison: First of all, I think in general, we don't listen to women, so let me just start with that. So, this whole thing around...the upper two-thirds of the vaginal canal having less innervation and therefore [are] less likely to experience pain, is baloney. So, if someone is telling you they're in pain, believe them, right? And so, I do think that there is something to be said about looking at those trends and then realizing that maybe there is something going on, right?

I was actually just on a call with some folks from the Clinical Consultation Line that mainly takes questions around HIV and hepatitis and those kinds of things, but they also get some questions around, substance use disorder and sort of a syndemic approach. And so, one of the things that they were saying is that one of the reasons why they love having folks from all over the country call in and give them information is that they tend to be that [sort of] litmus test to see trends, if they keep getting calls [about] similar things. One of the things was xylazine, they were seeing all of these folks that were getting these really crazy wounds and [they were] trying to figure out what was happening. And so, again, this is where data really does help drive change. If there are a bunch of people talking about 1 topic, maybe we should pay attention to that topic.

Steier: Totally, totally agree. And to your point, it totally it really is such a double-edged sword, right? It allows bad information, unfortunately, to travel really quickly, but it also allows—I mean, clearly, we're here, you know, we found a home on social media, putting out information. It is also a source of good information, and to what you to the point that you just made, it's sort of a two-way line, right? We can put out the information, but then it also allows us to listen to the people, and to be then responsive to their concerns, their questions, and again, knowledge gaps and all that good stuff. Could not agree more.

Key Takeaways:

  1. Data-Based and Evidence-Informed Decisions: Using her podcast, Unbiased Science, Dr. Jessica Steier explains that she doesn’t intend to tell people what scientific opinions to have. Instead, she encourages listeners to use data and factual information to create their own evidence-based decisions to avoid falling for misinformation and disinformation.
  2. Misinformation Versus Disinformation: Dr. Steier explains that the difference in these terms revolves around intent. Misinformation refers to the unintentional spreading of inaccurate information, whereas disinformation is the intentional spread of false information. Dr. Steier also highlights a study conducted by the Center for Countering Digital Hate which found 12 people were responsible for the bulk of disinformation surrounding vaccines.
  3. The Benefits of Social Media: Although social media has been harmful in spreading misinformation and disinformation, Dr. Steier and Dr. Christina Madison discuss how it has been beneficial in emphasizing previously underdiscussed topics. As an example, they note the pain that women experience during IUD insertion, and how the mass discussion of that topic has encouraged health care practices to begin offering solutions and additional education.

Madison: One thing I wanted you to just kind of explain—because I think some folks still don't really understand the term[s] mis[information] or disinformation—and even just saying that someone is lying, I think it's so interesting that you don't necessarily hear someone just being completely fact-checked and [saying], "This person is lying." Can you talk about what that difference is—malicious intent versus non-malicious intent, [or] unintentional versus intentional—when it comes to spreading things that are not factual?

Steier: You just hit the nail on the head, the difference between misinformation and disinformation is intentionality. So, when someone spreads misinformation, they don't know that what they're spreading is inaccurate information. So, [for example,] if you have an aunt who reshares a post saying "vaccines can cause autism"—which they do not—they're doing it because they heard this bit of information, obviously it sparked concern, and so they're sharing it often with good intentions, right? Whereas disinformation is you know the information that you're putting out is inaccurate, and yet, you're still putting it out. There was an interesting—and I'm probably going to botch this—study done by, I believe it was the Center for Countering Digital Hate. And they did a study [where] they found that there were 12 people that were responsible for the large majority of bad information [about vaccines] circulating online, and they coined the term the "disinformation dozen." And so there were a dozen people...the large majority of [this] disinformation tracked back to those 12 people. And when you look at the earnings for these people, there is money to be made because...when you're pushing out information, if you grow your platform enough and you're willing to accept sponsorships and funding when you don't care about the legitimacy or the accuracy of your information, you could make a whole lot of money, right?

And the funny [thing is]—I don't know if it's funny or sad, I don't know if I should laugh or cry—I don't know about you, but I get accused all the time of being a shill for pharma, and all these things. No, I'm not shilling anything, I'm just spreading credible evidence-based information, maybe you should take a look at the paychecks of people who are putting out bad information. And don't get me started on how folks forget that some of alternatives to the pharma world, like supplements, chiropractic, essential oils...those are multibillion—if not, trillion dollar industries. Those are for profit machines, and so, I'm not quite sure why there's this double standard. They're lining the pockets of those people who are putting out this bad information, steering people away from pharma, which is so—I don't need to tell you—tightly regulated for safety, for efficacy, and [instead] steering them towards these alternatives which have none of that. You know, there's no oversight, it's like the Wild West.

Madison: I really want to make sure, we're not bad mouthing anything alternative, we're just saying do [the] work, right? Make sure that whatever you're putting in your body, whatever you're endorsing, whatever information [you're putting] out there, that you do your own due diligence to find out, is this a reputable source, is this based in real information. And then really understand what is a reputable source? Because I do think the public—from a health literacy standpoint, and from an education standpoint—if something is flashy, pretty, and looks nice, and the person who is saying the information is someone that you identify with, that you feel like you have shared and lived experience, of course you're going to take their information and you're going to internalize it and think that it's good for you.

But again, just remember, what is the motivation, right? Always look to see does this say [it is a] sponsored post, is this an ad, does this have a twinge of "maybe this sounds a little too good to be true?" Just take a moment and think for a second. We're not saying everything else is bad, only use something that has, [for example,] a double-blind, placebo-controlled trial with it. We're not saying that, we're saying just do your due diligence and make sure that the person that is giving that information on the other side doesn't have a motivation to tell you something that's incorrect. And then also, is that person a licensed health care professional? Does that person have a degree? Because if they don't, and they're giving you health information, you need to take a pause.

Steier: Thank you for saying that. And to be very crystal clear, there's no judgment. I mean, I understand, first of all why people even seek out alternatives, right? Oftentimes, these are people dealing with chronic conditions, chronic pain, and they're seeking relief, and so, I totally, totally get it. For me, my bone to pick is with the folks who intentionally sell snake oil or [are] giving bad information to people and disinforming them.

Madison: We call those "confidence men," or con men—or women, for that matter—but that is where that comes from...and it was like, door-to-door salesmen, and even going back farther, it's apothecaries that were not sanctioned, and then that's how you saw the pharmacy world and the medical world divide. Because at one point, they were actually combined, and most medical education was done through apprenticeship. And so, then you would see reputation...like, you would have this 1 person, [they] would get an apprenticeship, and then would basically take over their practice once they were retiring. But then what happened is, you saw these people kind of pull away and then they started doing these tonics and potions, and they would travel through these traveling fairs. Then they would sell these remedies that really were not real remedies...and the origins of some of these things are really interesting when you look back and it's stuff that we, you know, we still deal with today.

So, I just want to give you just a couple moments to chat a little bit about your podcast—now that you've got season 5 [and are] getting ready to hit the hit the paces—and what folks can expect, where they can find information about the podcast, and then also where people can find you on social media.

Steier: Thank you so much. As you said—I still can't believe it—[we're] gearing up for season 5 of the podcast, which is—we're not exactly sure when episode 1 is going to drop, it might be August 21, or the 28th—at the end of August for sure. I can give you a spoiler, I haven't even shared this publicly yet, but the first episode is going to focus specifically on Alzheimer [disease.] It's been in the news quite a bit in terms of...

Madison: ...multiple drug companies and different drug approvals, yeah.

Steier: Exactly. And I was actually joined by this awesome postdoc researcher from Northwestern [University], Dr. Sarah Scheinman, who joined me for a great conversation. She's a neurobiologist actually doing that bench research on Alzheimer drugs and really trying to understand...because there's so much we don't understand about Alzheimer disease. And by the way, just as a side note, I think that's so important for folks in science and public health to acknowledge that we don't have definitive answers to things. Science is about the discovery of information, this is an ongoing process, and I feel like people misunderstanding that can sometimes make it seem like we got things wrong. It's not that we were wrong, it's that we just we learned something new, our knowledge evolved.

So, that's episode 1. A lot of my focus for this season and for my content on social media is I'm calling it my "bridge-building era," I really want to focus on those hard-to-reach populations, the skeptics, and specific pockets of the population that are more likely to mistrust the scientific and medical establishment, hearing their concerns, responding to them, lots about pharma, lots about foods that we eat...there's so much misinformation and fear-mongering about the ingredients in our foods, and this like blanket vilification of processed foods, for example, and there's so much information out there, and I feel like we're becoming this society that's really driven by fear. I think a lot of it stems from not having accurate information, and so, that's my goal for this season of Unbiased Science. So, you can tune into the podcast on any platform where you listen to podcasts, it's [called] Unbiased Science Podcast, or you can follow along on social media at @unbiasedscipod. So, that's where you can check out the content.

Madison: Awesome. And then, I always try to end with this question as well...If you were able to talk to your younger self now that you have all of this knowledge, what would you tell yourself and why?

Steier: That is a great question. What would it be? I guess there are so many times in my career where I felt like I was really reaching a breaking point, where I was hitting a brick wall, I mean, especially when we're talking about entrepreneurship, where you hear "no" a lot more than you hear in the beginning. But basically, I would just tell my younger self to not be so hard on myself and to not take it as a sign of failure. I know that might be cliche, but genuinely...none of those things, if those things didn't happen, I wouldn't be where I am here today. So, don't take those things as failures. Obviously, I kept going but at so many points I was like, "Wow, I lost. Why am I doing this? I'm a failure." And if your heart is in something, you have to listen to that inner voice, especially if you're in a field like public health, which...at the heart of all of this, is a desire to do good and to leave the world a better place than when we entered it, and so, I think just staying true to your mission...I'm just thinking about Jessica through the years, and how many times I wanted to give up. I'm proud that I didn't, but I'd probably be a little less hard on myself.

Madison: Yes, and I'm sure those half a million folks that you touch their lives on a regular basis through your contact with social media would have been very sad if you had given up.

Steier: Oh, well, thank you. Thank you for that, and thank you for everything that you are doing, [it's] such an honor to talk to you and just to count you as a friend and a colleague and [I'm] excited for all that's to come.

Madison: Absolutely. Well, I just wanted to say thank you again for your time today, because I know you're busy, too. We are recording this right before our kiddos are supposed to go back to school, so you know, I think that we do our best to be all the things as moms, wives, and business owners, and the struggle is real. And...in spite of all of that, you're still dedicated to improving the lives of others, it means a lot, and I think that we should all strive for that. Because I know I come from a place of service and [I] really wish and hope that more folks with degrees and folks with knowledge and understanding could do more to be on social media so that we could dispel a lot of the mis[information] and disinformation out there. So, thank you for what you do, and I will continue to be a fan and I hope that we have birthed a few more with this episode. So, thank you.

Steier: Thank you.

Madison: All right, everyone, this has been another episode of Public Health Matters. I am your host, Dr. Christina Madison, also known as the public health pharmacist. And remember, public health matters.

You can learn more about Unbiased Science podcast and Vital Statistics Consulting, and follow them on social media:

Connect with Jessica Steier on LinkedIn!

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