The Current - Tackling medical misinformation spreading online

Episode Date: November 29, 2024

The CBC’s Nora Young has been looking at how medical misinformation spreads online, and how influencers have brought fringe ideas into the mainstream. She shares what she found.

In 2017, it felt like drugs were everywhere in the news, so I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with Season 3 of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy.

On Drugs is available now wherever you get your podcasts. This is a CBC Podcast. Hello, I'm Matt Galloway, and this is The Current Podcast. This is the detox kit that we're doing on our toddler for parasite and heavy metal cleansing. This is the Zeolite Detox Kit, and we've also incorporated the fulvic mineral. I got to tell you, I have a dealer for my milk. Drink raw milk and people get so mad at me. Raw cow milk? What are your thoughts on that? I drink raw cream in my coffee every morning. Our schools of thought think that drinking raw milk is better because once you process it and everything, that's when the dairy becomes harder to tolerate.

You know, there is a seemingly bottomless well of social media influencers sharing health advice. False claims of natural miracle cure products flood many of our feeds on TikTok and Instagram. Influencers are pushing snake oil to reverse baldness, medications like the horse drug ivermectin to cure cancer. It's not easy parsing out reliable health information from the sea of online myths and disinformation, and this has researchers and professionals in the health world concerned. Nora Young is with the CBC's Visual Investigations Unit. She's been looking into this. Nora, good morning. Good morning, Matt. We know there is a lot of misinformation online when it comes to health care. People who will try and tell you something, people who will tell you that this thing will make you a better person or not taking

that will also make you a better person. What are you looking into exactly here? Yeah, it's not a new thing, right? I learned this week the word quack goes back to the 1600s. And it's definitely not new in social media. But what's interesting to me is that we're learning more about the way misleading health information spreads in online information environments. And that has lots to tell us about the spread of misinformation more broadly, but obviously with some more pressing health concerns when it comes to health information. Who is doing the spreading of misinformation? Well, one of the ways it's spreading is through so-called kind of wellness lifestyle influencers. So health and beauty tips, natural living, that kind of thing.

And this is where we see a lot of natural cures and treatments. Castor oil seems to be a particular favorite these days. And you know, Matt, I'm pretty crunchy granola myself, I have to say. It's true. But just because something is natural doesn't mean it's effective or even safe for that matter. And you certainly, of course, also see what we might call bro influencers as well, like who promote supplements and hair growth or, you know, wearing these kind of metal amulets against electromagnetic frequencies, that kind of thing. If you listen to a lot of podcasts, you will hear perhaps advertisements for some of these products. Indeed. On some of those bro podcasts and beyond. How much money is being made? I mean, it's hard to say specifically within the health niche, but the influencer industry as a whole in 2024 is estimated to be $24 billion US.

And I'm fascinated by the slippery slope from content to the marketing of dubious products. So influencers who present content in one area, you know, fitness, organic gardening, fashion, natural beauty, and then it gets interspersed with more problematic information tied to sales. Now, I talked to Rachel Moran about this. She's Senior Research Scientist at the Centre for an Informed Public at the University of Washington, and the lead author on a study earlier this year about the connection between influencers, vaccine opposition content, and product sales. Have a listen. We've seen a lot of misinformation spreaders use multi-level marketing products, particularly within the alternative wellness

space to kind of monetize some of this anti-vaccine messaging. Or, you know, we're seeing increasingly monetization of the content itself, whether that's through a sub stack or a Patreon. So, you know, if you like what I'm sharing and you think that I'm kind of a healthy person who has good information to share, then you can follow me on this platform where you can subscribe for a few dollars a month and they can earn money that way. So people getting to leave the specific social media platform to where they're being sold so called natural alternatives to vaccination or just in direct support for the content creator. And of course, there's no way to know for sure whether these influencers are true believers in these products

or they're cynically marketing them or maybe somewhere in between. Do we know whether those accounts and those influencers, are they targeting specific audiences with this? I mean, you can find influencers targeting all kinds of different groups since targeting is what works so well online. But Rachel and her colleagues were focused on gendered content. So like women's fashion, back to the land, homesteader, evangelical maternal content. So this targeting of the natural of home life,

and specifically in Rachel and her colleagues' study, being a good mom. There's this prominent theme of motherhood. You know, a mother or a decision maker within your family, you're wanting to make the best choice, especially the best health choices for your family. And so a lot of the women who are sharing this kind of information are doing just that, just trying to be informed. But unfortunately, along the way, have started sort of sharing information that isn't grounded in sort of medical fact. I mean, anyone can be misinformed about health, right? But in terms of how information spreads, there's a sense of health decision-making is not just like a rational choice, but is bound up with a sense of

who you are as a person, right? Like it seems to be a distinctive quality of the way this circulates via influencers. It's like a fascinating dynamic of how the spread of information intertwines with like social and political identity. Many of these influencers are not medical professionals. How are they able to convince somebody to buy into what it is that they're selling? Yeah, I mean, one point that's clear from Rachel's study is that this marketing is effective because influencers build a community around them that relates to their content, right? That's why we follow influencers. So there's this trust relationship there. And of course, that's just the currency of social media. Have a listen.

People who do research in these spaces often talk about this idea of a parasocial relationship that we build with the people that we follow online. That's this one-sided interaction, you know, where we get to know this person because we follow there every day. We see what they eat for breakfast. We know their children because they share pictures of them on their online accounts. And that forms this relationship of trust that is not necessarily based in any sort of traditional markers of credibility, whether that's professionalism, or, you know, having a degree in something or being an expert in a specific space, but more

tied to that kind of personality trust that you're like, I like this person, I think that they're healthy, they look good. And so I'm going to trust them when they share this information, whether or not it's not necessarily the information itself is credible. They look good, Matt. They look good. Yeah. So there's the trust, but often there's also a grain of truth in many kinds of mis- and disinformation. And in an information environment where there's so much contradictory content, I mean, trust is a powerful thing, right? So beyond what's coming from influencers, what do we know about other ways that people are being fed this misinformation?

And what would impact that would have on their health? I mean, people just increasingly get their information online, obviously, and more specifically from social media. But the thing is, when it comes to health misinformation, you don't even have to specifically seek it out, by following particular influencers. like the logic of digital advertising means you're going to be exposed to targeted ads, including the potential for misinformation. And a disturbing example is with so called alternative cancer treatments. Marco Zanoni is a postdoctoral researcher at the University of British Columbia, and he researches how people with cancer are exposed to misinformation and problematic advertising online,

including for unproven alternative treatments or private clinics. And the stakes are high. Listen to this. So when somebody gets a diagnosis of cancer, naturally they're going to go on Facebook, Instagram, these platforms to look for support, trying to find community online. But unfortunately what happens is a lot of the time, some of these more unsavory entities use the targeted ad features that Meta has to deliver these ads to patients with cancer

with very tailored and persuasive health messages. And one of the really scary things about this is that there's supposed to be enforcement systems that, you know, kind of stop these harmful miracle cure claims, but they seem to be getting through not working that well. Now, I asked Marco about meta in particular, but as he notes, this extends to many online platforms because of the nature of online advertising, right? Like, we've all had that experience of targeted ads following us around online wherever we go. Digital advertising works based on the pattern of our behavior. But what's simply annoying for us

most of the time here can obviously be serious consequences in the case of health information. Kind of worst situation that can happen is if somebody sees these ads and they have a curative cancer and they forego conventional care for these kind of unproven, scientifically unsupported treatments. We know alternative cancer treatment, and the evidence says this is just definitive, like there's no two ways about it, that it's associated with earlier time to death if used without conventional cancer treatment. But it's also financially very hard on a lot of people. Some of the clinics we study cost $60,000 US dollars for a three-week stay

for very simple vitamins and different, kind of vitamins and different kind of natural supplements. It's so interesting. I was just going to say, look, part of this is about the environment that we're in, right? Social media environment, the way that we get information. Beyond that, though, what else is going on here? Why is this happening now? Yeah, I mean, part of it is certainly just the speed of communication, as you say, and

the way social media and digital advertising makes that extremely hyper-targeted advertising possible. But, you know, I guess you could ask a question about ideology, right? Like, we could say that at least that false and misleading health information is going to spread well where it dovetails with ideologically driven concerns. Is that what this is about, about pushing some sort of ideological point of view? Well, I don't know. It's a question of whether it's pushing it, but at least we can say it conveniently works out that way. Like for instance, misinformation is spreading online now that ivermectin is an effective treatment for cancer. Like you'll recall that ivermectin was touted as COVID treatment. So it

fits into a broader political discourse. Like some of these influencers claim the government is suppressing it because it's a cheap and widely available medication. Now, before we go any further, Matt, let me be clear, ivermectin is unproven as a cancer treatment. There's no clinical evidence to support it. But as is so often the case with misinformation broadly, there is that grain of truth. But full information really matters. Here's Mark Hogan. Ivermectin is being studied for cancer right now, but it's not close to being used as a treatment for cancer. And it's very different for somebody to say, I'm studying ivermectin to see if it's something

that can possibly help cancer patients in the future versus somebody saying, hey, go use it right now. And unfortunately, we see a lot of people spreading misinformation. Ivermectin has become kind of associated with, you know, anti-pharma, anti-conventional treatment, anti-science in a lot of ways. So just to be clear, Matt, I got a statement from the director of Princess Margaret Cancer Care in Toronto, a leading cancer hospital, noting that while ivermectin has shown in preclinical studies to have activity against cancer cells, no studies have yet shown effectiveness or safety in patients.

And it goes on to say, any claims to the contrary are false, and given the possibilities of toxicity and adverse interaction with anti-cancer therapies known to be effective, patients are strongly advised not to take this or any other unproven therapy lacking clinical evidence. This isn't just way out on the fringes of society anymore. You think of the influence of someone like Robert F. Kennedy Jr., who is an anti-vaccine activist, very popular in those sort of alternative health circles. He could very well be the next U.S. Secretary of Health and Human Services. He will have a lot of influence over the medical system in the United States. What impact, from your perspective, would someone like him have?

Yeah, I mean, we've certainly seen misinformation go from social media to mainstream politics already in the U.S. presidential campaign. But this is different because, as you note, he may play an important role in the health care system. We've had a bit of a preview of that this week. You may know that Kennedy has said that he drinks raw, which is to say unpasteurized milk, and has supported its sale. Raw milk

has also been promoted by the kinds of wellness influencers we were talking about earlier. It's controversial because pasteurization kills harmful bacteria and viruses. Now this week, we've seen bird flu virus detected in raw milk for sale in California, where it's legal to sell in retail stores. So there's a direct

connection there. For patients, they're getting influenced and they are buying that influence and taking perhaps some of those supplements or doing what the influencers might say. If you are a legitimate healthcare practitioner or you work in the healthcare system, how are they, those people in that system, dealing with the patients who have been swayed by what they're hearing or what they're seeing. Yeah. I mean, I think it's super challenging because of what we were talking about before when it's not just a question of like, hey, should I evaluate raw or should I eat raw milk or not? It's connected to this idea of I'm a member of a community that shares these values, right? That makes it very difficult to talk to people about misinformation.

One promising technique that Marco mentioned to me and that I've seen used in the mental health care space is spreading good information in exactly those spaces like Instagram, YouTube, TikTok. So you see people who are medical professionals, who are influencers in their own way in these spaces, using the methods of communication that work very effectively in those spaces. Go where people actually are. And do what perhaps the influencers are doing. How do you begin to regulate an industry like this?

Whether it's the advertisers and the clinics that might be promoting this information or the individual influencers that Rachel was talking to. Yeah, I mean, Marco made the point that a lot of these alternative therapy clinics and ads for therapy are located in other countries. So that poses a regulatory challenge in of itself. In Canada, the law against misrepresentation in advertising also applies to influencers, or at least is supposed to. But one point worth mentioning from Rachel's work is that a lot of it was posted in stories, Instagram stories that disappear after 24 hours. So there's some real kind of whack-a-mole challenges in actually tracking down this stuff in the first place.

What about those platforms then? I mean, and it's not just social media. Again, it's what people are listening to in addition to what people are watching. Are there ways to minimize the spread of that misinformation online or educate people about the risks of what those accounts and ads are saying? I mean, how do you find accountability in the venue where that information is? Yeah, I mean, this gets at the heart of a lot of the debate about regulating platforms. I mean, platforms do regulate content, for example,

around hate speech or around pornography. We saw a push towards regulating content regarding COVID misinformation during the pandemic, but there's also been a lot of pushback on that, especially recently from politicians, from free expression activists, from purveyors of misinformation, but also, you know, from the platforms themselves. This is fascinating. It's a story of our times. Nora, thank you very much. My pleasure, Matt. Thank you. Nora Young is with the CBC's Visual Investigations Unit.