Health misinformation and disinformation: How to know what’s real

Dr. Ellen Beckjord: Stronger communities begin with good health—for everyone. You’re listening to the “Good Health, Better World” podcast, presented by UPMC Health Plan.  

This season, we’re exploring ways to achieve good health in today’s complex world. I’m your host, Dr. Ellen Beckjord. Let’s get started.

In this episode, author, psychologist, and expert in medical informatics Dr. Brad Hesse joins us to break down the ever-changing information environment we live in today—from social media to education to the information that directly affects our health.

Brad is my mentor from my time as a postdoctoral fellow at the National Cancer Institute. I am so thrilled that you're here with us on the podcast. Welcome to “Good Health, Better World,” Brad.

Dr. Brad Hesse: Thank you so very much, Dr. Beckjord. I appreciate the invitation and I can't wait to talk a little bit about health information and the changing environment.

Dr. Ellen Beckjord: You are an expert and have been working in this field for long enough to see lots and lots of changes. So I'll start with the very general question—and you've done so much of the foundational work that has generated the evidence that answers this question—but tell us, Brad, how the digital age has transformed the way that we access and receive and make use of information related to health?

Dr. Brad Hesse: Sure. And, Ellen, you may remember when you were at the National Cancer Institute with me—we had begun a survey called the Health Information National Trends Survey. We began it in 2001. That was, gosh, less than a decade after the World Wide Web was launched from CERN and only a few years after the government made a choice to let this research environment be opened up to the public. So we wanted to know, what did that mean for health information seeking? What does it mean for cancer information seeking?

We administered our first survey in 2003, and we were surprised at that time to find about 61 percent of the adult population was connected. And it…this is hard to believe; that's only a few decades ago that that was a surprising number for us, but that was pretty hefty. And so we knew that a lot of people were online. We tracked it over the next years. I think by 2011, it went up to almost 80 percent of the U.S. population was connected. I checked this morning just to see where we're at, and it looks like we're at about 93 percent connectivity to the internet.

So, what were they searching for? And it turns out that searching for health information was one of the first things that people looked for. The way that the Pew Foundation and Susannah Fox, who was at the Pew Foundation at the time, the way she referred to it is that they were looking for the vital information they needed to take care of themselves and their families.

So that was interesting. A lot of people said they had been online. We asked—and this is also where there's a real contrast here—we asked people where they would prefer to go and who did they trust? And they said, you know what, I prefer to go to my doctor first, but it's so hard to get an appointment that I go online first so I'm kind of prepped and ready. And sometimes I go online to search which doctor I'm going to look for. And that's a pattern that we've noticed has continued for about two decades. People go online first because it's easy, but they prefer to talk to their doctors, and often they'll take what they find from Doctor Google, they'll take that into their doctors and they'll have conversations. For the most part, this is what I think is helping people to interpret kind of a collaborative way what they're finding online.

So that's kind of a first point I want to make is that when people got online, it happened pretty quickly for us looking at health information. We still have the legacy systems. We still use television for public service announcements. We still have brochures. But more and more people have gone online to look for information but they don't necessarily trust what they find. So that's a start.

Dr. Ellen Beckjord: You brought up trust. And here's—you know, we could talk about this for hours. Back in 2001 when the Health Information National Trends Survey (or “HINTS”) began, which I believe to this day is still the primary national survey that is specifically focused on topics like how people access and make use of health information, that was really before the advent of social media. Can you talk a little bit about what you were able to observe when social media entered into the digital landscape and became a part of the internet that people could then use for accessing and finding information related to health and some of the pros and cons of that?

Dr. Brad Hesse: Yeah. Wow, yeah. This is, this is topical, isn't it? And interestingly, it's some of what brought me into this whole study. So even before the internet was the internet, this was back in the 1970s and 1980s, there were these online portals that people could go to. CompuServe was one of these. There was a place called The WELL, and that was out of Silicon Valley. So it was pretty specialized for researcher types. But what they found in this kind of digital homesteading is that people would connect up with others who were similar to themselves and would talk a lot about a lot of things, but one of the more popular topics was to talk about health conditions.

So if you're sick often and you have a rare condition, you can't talk to anyone that's close to you necessarily. I mean, you do, but you don't get the same kind of social support, right? So they were reaching out to other people and they started coalescing online, so much so that researchers would go to see what they're talking about. And then, they would use that to sort of improve their information that they're providing online for their customers. So that was the very beginning of social interaction mediated through an online environment.

In about the mid-2000s, I think, there was an evolution of the internet where it would become a platform for these kinds of social interactions, and there was an introduction of social media. So these were very formalized platforms where your expectation is you're going to go online, you're going to talk to people that you would see in your daily life, and some you wouldn't see, and you would have connections.

Dr. Ellen Beckjord: And people called that web 2.0 at the time, is that right?

Dr. Brad Hesse: That's exactly right. Web 2.0 is this notion that we're creating a platform, and embedded in that notion of a platform is the seed of something we're going to have to pay attention to, because what they're doing is they're abdicating from any kind of responsibility to edit what people are sharing with each other.

So that's, that’s the beginning. But they're not making a lot of money yet. They have to make some financial decisions. And in social media, what they decided to do is rather than charge a subscription fee, they're going to make money off of advertising. The minute that happens, psychologically, people are going to be motivated to get eyeballs on screens. And to get eyeballs on screens, anything that is outrageous would often become viral. And now social media was starting to foment conflict in places that we didn't want it to happen before. We didn't think it needed to happen before. And also, psychologically, keep in mind that if you're on a computer, you don't see the other person. You're just seeing maybe an icon of that person. So you've got a lot of cues that are gone and it starts to disrupt civil discourse. We used to call that flaming back in the day, but cyberbullying is a term for it now. So that starts to emerge.

Now as we proceed, when the health information gets mixed up in social media, there's some good stuff—and this is going to be a theme a lot—you know, I reached out to an aunt who said, you know what, I too knew someone who had a, in my case, a hip replacement. I just did that. You and I were talking about that, and they said, this is what to expect. I could go on YouTube and I could find someone who shared their journey on hip replacement, and that's pretty good. That's the positive stuff. But that didn't often drive a lot of traffic. So instead, you would get maybe conspiracy theories about, well, this hip replacement is going to have some metal that in the long term is going to disrupt communication systems and bring down the fall of mankind. [laughs] You know, it's that kind of stuff.

Dr. Ellen Beckjord: [laughs] Right.

Dr. Brad Hesse: And we saw a lot of that during the COVID-19 pandemic; sometimes you're going to get good stuff, and sometimes you're going to get stuff that's accelerating more rapidly than we anticipated. And it is dangerous misinformation or even worse than misinformation, disinformation. And what that means is that there is a willful act to say, I know this is untrue, and I'm going to put that out onto social media. And we saw that from a lot of bad actors. So, that's—that's the mixed bag that we're in. Now there are ways to get around that, we'll talk about that in a few minutes.

Dr. Ellen Beckjord: I like the distinction between misinformation and disinformation; that's helpful. And I'm remembering, Brad, research that you and I did with Dr. David Ahern, at one point led to some focus groups that we conducted. And I remember being really struck by a story that a participant told about preparing for an ultrasound guided breast biopsy. And the participant had watched a lot of videos on YouTube to prepare for this, and in fact, had watched so many that when her ultrasound guided biopsy happened, she knew (because she could see the screen), that it was really likely that she had cancer. She had watched enough videos and had seen what the images of a malignant tumor looked like versus a cyst and reported during the conversation that we had that that had been, you know, an empowering experience for them. And so what sometimes we've called the disintermediation of access to health information, or even sometimes the democratization of it, as you've pointed out, there are benefits to that.

But I'm wondering also, not only does that then open a door for disinformation and misinformation, it seems like over the last 25 years that our attention span has attenuated some or a little bit or maybe a lot, and that there's a little bit of a preference or a requirement that we can get what we need to know really quickly. But a lot of topics related to health are nuanced and they can't really be reduced to a 30-second sound bite. So as you think about this, do you think that part of what we're also working to, I guess, push back against is an expectation that, you know, I should be able to understand any health condition in less than 30 seconds, that that's an unreasonable expectation?

Dr. Brad Hesse: Yeah. It certainly seems like we want immediate gratification, right? And I want to know what my diagnosis is today. And if it's a process that takes a lot of screening and it's going to be a month before I'm finished, well, I don't know if I'm going to buy that. I'm going to go online, see if I can find other answers to help me make my decisions upfront. That can be a problem behind this.

So the question is how do we deal with that? Because this isn't new. I mean, we for a long time have struggled with people sending things in the mail saying, “You want to lose weight? Here's a magic pill. You want a new diet? We'll give you something.” And that's happened in the mail. If it was fraudulent, we put laws around it and we said, no, you can't put this fraudulent stuff into people's hands. It's dangerous to them. We haven't done that as much in the online environment, but we need to.

Meanwhile, though, we can talk about it. We can do the kinds of things that you're doing with a podcast. This is a new deep dive medium we hadn't seen actually, in the age of Twitter, where everything is 255 characters or something. Now it's a deep-dive medium. We can talk about this nuance.

The way that some folks talk about this in the world of misinformation, is they say, so, someone gets something and it's just in error—we can either prebunk or debunk. And prebunking means that we talk about the scams that are out there. So I see on television (crossing media a little bit) frequently discussions of scams that senior citizens—and I'm grateful to put myself in that category these days—often fall prey to. I've learned about it and I'm pretty careful on what I click on and what I buy into. That's prebunking. And it's giving us some ideas of how people could get scammed, how people could fall prey to misinformation or disinformation, and how to back away from that.

Debunking is if something has actually gone out that's in error and then how to correct that record. And I think what happens is that the trusted sites on the internet—and remember, the number one source of trust is a physician, and that means that the physician’s medical plan, if it has public-facing information, becomes as trusted as the physician often. And then even in the U.S., the government hosted health sites like CDC and NIH, they've always been something that will hold kind of the last line.

So if we're prebunking and debunking and we're saying, hey, if you want to do your own research, we encourage that, but we need to help you understand how to tell what is good information and what might be misinformation: Look to the source. See if there’s a science behind this. See if it's a subtle science, or if you're seeing claims of anecdotes. Oh, I knew one person. My aunt knew someone that knew someone else and this is what happened so therefore I'm never going to put my seatbelt on again because they got thrown from the car. That's a classic fallacy. We can teach people how to get around those fallacies.

Dr. Ellen Beckjord: Yeah.

Dr. Brad Hesse: We're in a world of information demand and attention demand, but I still think that people want to make the good decisions and the right decisions when it comes to their health, so they’ll listen when they need [and] when they get the opportunity.

Dr. Ellen Beckjord: Can you talk a little bit about the experience that people can have, where they're on social media and things are coming at them that may be related to health, that can concern them, that may bring up a topic that leads a person to think, Jeez, I didn't even know this was something I should be worried about. Should I be worried about this?

I mean, under the umbrella of dis- and misinformation, but of the targeting and tailoring in particular, do you have any advice for how folks can navigate that? Because I'll tell you, I feel like I'm a pretty savvy internet user, and I know that I fall prey to this at times, that there are things that are targeted to me on my limited use of social media that make me wonder, Jeez, is this something that should be on my radar?  What advice do you have for folks in that particular context or related to that experience?

Dr. Brad Hesse: You know, we can tailor advice for people using this technology. And we had even invested in techniques to make our recommendations very personal. And then all of a sudden that got weaponized by this original sin of saying, we need to make money off these platforms by driving advertising and clicks and that kind of thing. So now we're in a full-blown surveillance economy where our data are being harvested and processed and used against us, and used for us too. I mean, I won't say it's all bad, but often it feels like it's used against us.

So that is one aspect of what's happening right now. We go online and the content that gets put up on our wall on Facebook is streamlined to a search that we did five days ago and is pushing something that is not necessarily credible. Some of that discussion with people about what to expect there, that could be some of the prebunking discussion, right? This is what may happen to you when you're online.

But, there are some other pieces too that I think of with this. I think of what happened during the pandemic and [what] folks referred to [as] “doomscrolling,” right? So, oh my gosh, you want information—that's good. And you want information about your health—that's good. But what is put in front of your attention span is something that seems to be extremely negative.

So a couple things to remember. Some of it is as you're interacting with this, be prepared. Recognize that people are going to start assailing you with their advertisements for the latest snake oil. And you've got to think about that. Talk to someone you can trust—a health care provider’s a good source, but other family members sometimes are a good place to start too, before you make any decisions. So that's one thing. Also, recognize that the sense of negative energy you're getting from doomscrolling, that naturally occurs with people when that's all you get is that erroneous presentation of negative data, and you miss all the positive that's happening over the course of the day. The statistics are sort of taken out of whack. So recognize that that may happen. Limit your time online just scrolling—even on news sites sometimes, because that can happen. Don't go down these rabbit holes, but be more purposeful in searching for what UPMC has to say about that particular topic, or the CDC.  And then once you get more reasoned answer to that, back off from it and don't get hung up on it. So, yeah, this is natural, but boy, this happens a lot these days. And it's something to watch for.

Dr. Ellen Beckjord: I'm glad that you mentioned time boxing. If you want to have a strategy to limit your use of technology, in particular a smartphone, because I can do almost anything on my smartphone, I don't think I'm going to be successful if I say, Well, I'm not going to use my smartphone anymore to check email, for example. Like if I was thinking about, well, I won't use my smartphone to check work email or I won't use my smartphone to do shopping anymore, there's just no way in heck I'm going to adhere to that because I'm going to do with my smartphone whatever I can do with it. But if I say I'm not going to use my smartphone after 6 p.m., or I'm not going to use my smartphone or the internet on one day of the week, that I think I can adhere to. So I think it is the time limitation rather than the task limitation that's probably going to be a more successful behavioral strategy.

Dr. Brad Hesse: Yeah, I think you're spot on with that. And this goes back a few decades where I remember people looking into the future and seeing some of these new trends emerging or what is going to dominate your attention so much that it said the secret of the internet age is not going to be to connect, but to disconnect. And to figure out when to disconnect and how to disconnect. And even something like going down a newsfeed that, say, I'm going to give myself 20 minutes to learn all that I can. And really, in about 20 minutes, you've got all the headlines. And then I'm not going to drill down anymore. I'm going to say that time limit is over and I'm going to tend to something else. So, yeah.

Dr. Ellen Beckjord: Yeah. Well, this from a person who, just hours ago had someone return her cell phone to her that I'd left in the bathroom. So I'm doing great at it, right? [laughs] Is this yours? Yeah, I can't be without it.

Dr. Brad Hesse: [Laughs] Yeah, I'm glad we're so human. And the story, much of the story here about this technology is the human story. And there are all these kind of unanticipated effects from these technologies. And it doesn't mean it's all good and all bad—but watch out for some of these things. Psychologically, this can really play with your emotions and your head if you're not aware of it.

Dr. Ellen Beckjord: That's right. A moment ago, when you mentioned, like, the public-facing component of the trusted provider's documentation, are you talking there about medical records, people's access to their own medical records? Sometimes we've called these personal health records. I don't tend to hear that used as often, but it seems pretty ubiquitous now that most people, if they want to, can gain access to the documentation that their providers have completed on their own health conditions. Like I had bloodwork done the other day and I had the results available to me through my patient portal, like within hours. It was remarkable. Is that part of what you're referring to?

Dr. Brad Hesse: So if I can go back to what was happening in the beginning, what we were finding through our data, people would go online and they would find maybe a medical system, but there was no way they could email their doctor back in the 2000s. That just wasn't set up yet. Well, in 2011, Congress passed an act that put money behind development of electronic health records, all geared toward meaningful use in taking care of patients.

So now in 2025, we find when we ask people, are you able to communicate with your physicians? A good half of them say, Yeah, I'm emailing all the time to my physicians. We say, do you go online and look at your medical record? Which is, we used to call this personal health records. In something like Epic, they call it MyChart, but it's just a way that you can go find and even track what's happened over time. Now we see this immense support from the health care system that didn't exist in 2001. And that, I think, is another leverage point where we're going to pay attention to, to be sure that you get the health information you want, you need, at the time you need it, and it's personalized.

Dr. Ellen Beckjord: Yep.

Dr. Brad Hesse: So if we look at what happens with [those] electronic health records: Boy, I'm a patient now, I know I need to talk to my physician about something that I think I'm very concerned about. I'm going to set up that appointment, it's going to be a month and a half down the line. Between now and then, I'm probably going to be online searching to be as smart a patient as I can be. And then I'm going to go in and I'm going to put on a robe and I'm immediately going to—when you're disrobed, I saw someone say, you immediately forget everything people tell you [laughs]. And so I go back and I look at those notes afterwards to see if I remember correctly about what I'm supposed to do. And now I've used three levels of conversation around one interaction, whereas before the interaction was all we had. But now we have augmented interactions.

Dr. Ellen Beckjord: Yep. And it can be incredibly helpful and empowering.

Brad, one of the things—one of the many things that I admire about you is you are wonderful at balancing what seems like just a foundational optimism with a lot of realism. And that's been helpful to me personally and professionally, because I worry that we're not moving in the direction of progress that we had been for so long, thanks to the work of you and so many others, when it comes to having good access to trusted sources of health information. But I would like to ask you to just share your thoughts on any of the topics related to the information environment, including ones that you may have serious concerns about, but also would invite you to tell us about the things that make you feel excited and hopeful at this time.

Dr. Brad Hesse: I mean, we all survived the pandemic, and as we got through the pandemic, a couple of things happened at the same time. Good and bad. So, people all of a sudden were using something called telemedicine. And we had talked about how telemedicine could help folks when they're maybe far away from a clinic and they just have a question they have to get answered. And you can do it through a telephone call. You can do it even through a Zoom call. There are a lot of ways you can use telemedicine. Well, all of a sudden we all started using telemedicine. Many would argue we overcompensated, used way too much during that first year of lockdown. But if nothing else, that came online and it didn't go away.

Dr. Ellen Beckjord: I'm glad that you brought up telemedicine. And I think you're right, that's a silver lining post-pandemic, much more frequent use of telemedicine, which is certainly helpful for convenience and for access—but it also in many cases is quite literally a lifeline.

Dr. Brad Hesse: Yeah. So that does give me a lot of hope and in part—and this is I think some of the story of technology too, is that it comes out, everyone's excited about it. And usually the excitement they have about it never materializes. It's a little bit too much. AI and we've got, you know, robots taking care of our house and all that. Well, behind the scenes, meanwhile, things are advancing and I'm sitting out here while Roomba is taking care of my house. You know, it's vacuuming. So, while you weren't noticing, and you take it for granted, these things have started to be put in place that will now make you more resilient. And I think telemedicine and this connection to your health team through electronic messaging and your health record, those are three things that are very important.

Some other things that happened is that, in the past 10, 15 years, there has been an activation of investment outside of the health care facility that helps people become more health minded. And when I'm talking about that, I'm talking about Fitbit and my Apple Watch that I look at. I've changed my behavior considerably over the past 15 years precisely because I'm counting my darn steps, right? Little things that we're all kind of tak[ing] for granted now that we do, that can help us out if we take advantage of it. Or even when I fall sometimes, I'll get a message from my Apple Watch saying that, “you've fallen, do you need to alert someone?” That's pretty big, too.

Okay, so that's the outside world. And then we have the world internal to medicine. Now, here's both good and bad as we move forward. If the outside world tries to destroy the world of medicine, we stand the risk of getting rid of all that was good. We can't afford in health, where health is such high stakes, simply to destroy what we know works. We need to build on evidence, scientific evidence, and we need to use our health care systems and depend on these outside companies who are developing devices to adhere to the same insistence we have on safety through the FDA to be sure that we're protected in this new environment. And then I think we can move forward continually in these positive ways.

Dr. Ellen Beckjord: So, Brad, what are some things you'd want our listeners to know when it comes to navigating information as it relates to good health? 

Dr. Brad Hesse: A couple of kind of takeaways I want people to recognize is that with any communication technology, we often don't replace previous technologies. So, you know, my father-in-law would go into the bank instead of an ATM so we could talk to a person. So banks still had to have a teller. And the same is going to be true in the world of health care, that we're going to still need to have people with people skills to help develop that very important relationship we just talked about.

Also, when the pandemic hit, I would look to my local news channel and we know that local news becomes kind of the center of prebunking and debunking, when it comes to misinformation.

And I think what you and I have talked about, and you really brought this up brilliantly, is that this is like a new symphony. The face-to-face is complementing what we can do online through a podcast, what we can do online with asynchronous information—stuff that's put up there for education that I can go and look at in my leisure time, even when my attention is getting split up quite a bit. I know I'll get some time available if it's important to me.

And I think the more we talk to people about science and we engage as you're doing, helping to educate everyone about the value of medical evidence and what that does, what that's done to improve our lives over the past 100 years, that's something else that I look to, and I hope people have some hope of optimism through that.

Dr. Ellen Beckjord: Yep, I agree. And it's so great to get to have a conversation about the information environment and communication science, because in so many ways it's really where the rubber meets the road. I mean, unbelievable progress has been made in the generation of scientific evidence as it relates to health and health care. But so much of that potential really hinges upon our ability to translate that into information that people can access and make use of and understand to affect their knowledge and attitudes and beliefs about their health and health care, and we need to continue to do the best job that we can. Otherwise, I feel like we don't get to reach the full potential of all of that scientific progress.

And that has been most of what I think your incredible career has been about. And so I just want to say thank you for taking the time to talk with us on “Good Health, Better World,” for all of the work that you've done, and of course, for your mentorship of me and the impact that you've had on my career. It's of course one of the greatest gifts of my life. So thank you, Brad.

Dr. Brad Hesse: Oh, thank you, Ellen. And talk about someone who takes the ability of a psychologist to really interact with complex systems and come up with stories that are understandable. This series is doing it, and you're in the center of it. So thank you so much for doing that for all of us.

Dr. Ellen Beckjord: We hope you enjoyed this episode of “Good Health, Better World.”

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