An important component of cancer care is communication with patients and caregivers about their disease.

But in a communication age where social media is king, cancer misinformation travels far and fast.

“What keeps me up at night is thinking about the root causes of the spread of misinformation — the disinformation endeavors and what they may do to public health and people’s emotions and relationships, fostering hate between groups and division in society,” Wen-Ying Sylvia Chou, PhD, MPH, program director in the health communication and informatics research branch of the behavioral research program at NCI, told Healio.

Chou referenced an editorial commentary she wrote a little over a year ago for American Journal of Public Health on the results of an analysis of the “#China-virus” hashtag on Twitter during the COVID-19 pandemic, including how it “emboldened xenophobia and racist sentiments.”

Wen-Ying Sylvia Chou

“Online and offline interactions are intertwined. Powerful people on social media can affect the real world and cause harms in vulnerable people; it’s not just words,” Chou said. “That makes me think that, in a way, a cancer diagnosis is one way for someone to become more vulnerable. Without policies in place to protect the vulnerable and change how social media platforms operate, I worry that things are not going to get better and, if anything, get worse.”

The spread of cancer misinformation online isn’t limited to any specific disease or social media platform. It’s everywhere, according to experts in the field who are working diligently to identify the best ways to combat it.

Healio spoke with oncologists and leading communication experts in science and medicine about the prevalence of cancer misinformation on social media, important research into the issue and possible strategies to improve communication platforms and disseminate trustworthy information more effectively.

A problem ‘across multiple health topics’

Skyler B. Johnson, MD, physician-scientist at Huntsman Cancer Institute and assistant professor of radiation oncology at The University of Utah, discovered the scale and scope of cancer misinformation when his wife was diagnosed with cancer.

Like any other person, he went online to do some quick research. But unlike many people without a medical background, Johnson could identify misinformation.

Skyler B. Johnson

“I came away from that experience with quite a bit of empathy for patients,” Johnson said during an interview last year with Healio. “I encounter a lot of patients through my oncology practice who believe misinformation they read online and through social media, and it has led to delays in their diagnosis and treatment. It has led to refusal of proven cancer treatments and, ultimately, their early deaths.”

In July, Johnson and colleagues published results of a study in Journal of the National Cancer Institute that showed one-third of the most popular cancer treatment articles on social media included inaccurate information. Perhaps even more troubling: Most of the misinformation they identified had the potential to harm patients with approaches that could have negative effects on treatment quality and survival.

In a separate, mixed-methods experimental study last year, published in Journal of Cancer Education, Chou and colleagues integrated eye-tracking, survey and interviews to examine how participants assessed cancer messages’ believability when viewing simulated Facebook posts. They wanted to see how people discern credible information from noncredible posts, what caught their attention, where they looked and how they made decisions.

“We found that participants spent a lot of time viewing (dwelling on) the nonevidence-based posts,” Chou said. “It may be because inaccurate messages were generally more vivid and shocking or even emotionally provocative. They have stories, such as, ‘This is how my daughter was vaccinated and she was never the same person.’ There’s a lot for people to look through. And that parallels a lot of the misinformation tactics. Narrative is a powerful tool, but it can also be a tool to instill negative emotions such as doubt and fear.”

In 2018, researchers from NYU Langone Health investigated prostate cancer information on YouTube, which they wrote was the most popular of all platforms, with use by 73% of U.S. adults.

They found that 77% of the top 150 videos on prostate cancer had misinformative or biased information. Additionally, many videos contained outdated information regarding screening guidelines and treatment recommendations.

Another finding echoed that of many social media cancer misinformation studies: misinformative videos had more social media engagement (numbers of comments, thumbs up/down interaction, etc.), including more than twice as many average views per day, than videos with factual information.

“I think it’s extremely concerning that a lot of biased and misinformative health content is reaching so many people,” Stacy Loeb, MD, MSc, PhD (Hon), urologist in the department of urology at NYU Langone Medical Center and one of the authors of the study, told Healio.

Stacy Loeb

Loeb and colleagues took on another YouTube study involving the quality of bladder cancer information. They found 67% of overall information was moderate to poor and 21% of the videos, which had more than 1.2 million views, contained a moderate to high amount of misinformation.

“We’re seeing this misinformation problem across multiple health topics,” Loeb said. “We recently published a study on the quality of prostate cancer information on TikTok. … Among the videos that had objective information, there was a significant amount of misinformation.

“The bottom line is this is a cross-cutting issue that goes across many topics and platforms,” Loeb added. “It’s not specific to prostate cancer or to YouTube, but rather a major problem in society, as there is an increasing amount of unfiltered, user-generated content that is posted online and broadly disseminated.”

Hopeful stories with convenient answers

Brian G. Southwell, PhD, has tried to identify the motivations behind cancer misinformation and the reasons for its existence. He published a 320-page book, “Misinformation and Mass Audiences,” in 2018 and has regularly contributed his communication expertise to the health care sphere.

“It’s a really important question that does not get asked enough: Why is (this misinformation) out there?” Southwell told Healio.

Brian G. Southwell

Southwell, senior director of science in the public sphere at Research Triangle Institute (RTI) International, used the example of a social media influencer-turned-scammer. Belle Gibson rose to fame as a blogger who suggested she overcame brain cancer because of a diet she adhered to, only to be later exposed as a fraud who didn’t even have cancer.

“You can judge her, of course. But how did she rise to fame?” Southwell asked. “Because she was telling a hopeful story. If some people hear you can prevent breast cancer with cannabis oil or whatever, that might sound great. I think there is this certain degree of storytelling, telling stories people want to hear.”

As Southwell said, emotion plays a vital role, as someone either with cancer or with a loved one with cancer is easily drawn to stories of hope, regardless of their veracity, on social media. Stories of misinformation are also more novel and intriguing, whereas factual studies generally take time and produce results incrementally rather than overnight.

“There is nothing magical about false information, it’s just that the people who are creating it have an advantage relative to carefully peer-reviewed journal articles framed in a mundane way,” Southwell said. “‘Halloween Candy is Going to Cure Cancer.’ If you could write the headline first and just fill in the details … you have the advantage of being as sensational as you want.”

Perhaps some of these points — the accessibility of hopeful stories with easy solutions and the clickbait headlines — may help explain why a healthy proportion of cancer misinformation involves the use of cannabis.

Researchers from Stanford University and Kaiser Permanente Interstate Radiation Oncology Center published a study in January of 2019 on the space cannabis holds within the realm of cancer misinformation on social media. The researchers found that:

• online search volume for cannabis and cancer increased at 10 times the rate of standard therapies (more in states where recreational or medical cannabis was legal);
• cannabis as a cancer cure represented the largest category of social media content (23%) on alternative cancer treatments;
• of the 40 high-impact new stories on social media referencing “cannabis cancer,” 32 (80%) were false news that proposed cannabis as a cancer cure and only one (2.5%) was an accurate news story that debunked that claim; and
• the top false news story claiming cannabis as a cancer cure generated 4.26 million engagements on social media; meanwhile, the top news story debunking this false news only received 0.036 million engagements.

Although she supports medical cannabis for symptom control, Erqi Liu Pollom, MD, MS, said some of the results surprised her.

“It seemed like the false articles, the articles with inaccurate information, were more popular,” Pollom, assistant professor of radiation oncology at Stanford University, told Healio. “Accounts that are propagating this misinformation were more popular than the legitimate sources like the cancer societies, cancer physicians, etc. [Stories with misinformation] had broader reach than some of the more legitimate accounts.”

Pollom and colleagues also analyzed Facebook and Twitter posts from 31 leading cancer organizations during the study period. They found a drastic difference in engagement of these organizations’ posts on cannabis vs. the top 10 false stories on cannabis as a cancer cure, including average Facebook likes, comments and shares (97.7 vs. 452,050.1).

In addition, National Comprehensive Cancer Network member organizations in states where medical or recreational cannabis had not been legalized had zero Facebook posts or tweets on cannabis during the study period.

“If organizations like NCCN and ASCO could dedicate resources to provide educational material on a specific topic for patients, that probably would be helpful,” Pollom said. “Maybe they’re just not aware that it’s a big issue. That was one of the reasons we did our study, to see how big of an issue this was.”

AI and an active Twitter account

Although monitoring social media is a challenge, it’s not one too vast for researchers and medical professionals to try to tackle.

In July, Chou contributed to a paper published in NAM Perspectives on identifying credible sources of health information that recommended a “within reach” plan involving a system of spot checks for quality and integrity “supported by machine learning technology” and aided by expert human evaluation.

“We need more social scientists, ethnographers, anthropologists … I have a background in linguistics,” Chou told Healio. “AI with important, meaningful human input, working together with a computer scientists and engineers, is needed — and right now. We’re not doing enough. We’re kind of saying, ‘Well, these are the algorithms’ (causing misinformation to spread) as if humans have nothing to do with it.”

Loeb has contributed to this area along with University of Michigan researchers, including Rada Mihalcea, PhD, professor of computer science and director of the Michigan AI Lab. Work they presented at ACM International Conference on Multimodal Interaction in 2019 involved utilizing linguistic, acoustic and user engagement features to develop classification models to identify misinformation in prostate cancer videos.

“We reported preliminary findings that an algorithm to identify misinformative videos about prostate cancer had 74% accuracy,” Loeb said. “And we’re continuing to work on potential automated solutions to assist in the identification of misinformative content that could be potentially flagged or manually reviewed or removed, or that could be used to help design a smarter search filter to help health consumers identify content that’s more likely to be accurate.”

Another possible solution that doesn’t require AI but does require time and effort is for oncologists to actively disseminate information.

“For health professionals and scientists, an important action item is to participate in the online discourse,” Loeb said. “There is a quote that circulates: ‘The solution to pollution is dilution.’ For those of us who are experts in health topics, it’s important to be a part of the solution by providing high-quality and accurate information or public dissemination.”

Deanna J. Attai

Loeb (@loebstacy) and other colleagues hold monthly discussion sessions on Twitter about prostate cancer and the latest research that anyone can join. Similarly, Deanna J. Attai, MD, associate clinical professor of surgery at David Geffen School of Medicine at University of California Los Angeles, serves as a co-moderator (@DrAttai) for #BCSM, a weekly, live community forum for breast cancer.

Meeting patients where they are online may require a multifaceted approach on multiple platforms. In a study published in May in Practical Radiation Oncology, Pollom and colleagues found patients more apt to use Instagram and physicians more active on Twitter.

“I think we can do better in reaching out to patients and filling that vacuum of information so they’re not out there searching on their own,” Pollom said.

Other means of communication

Getting every oncologist in the world to join Twitter, Facebook and Instagram and spend a specific amount of time each day or week on the social media platforms likely is not feasible.

“One of the barriers, I think — not as an academic physician or researcher — is that we’re promoted on academic papers … writing for our colleagues rather than peers,” Pollom said. “I don’t think there’s a viable infrastructure yet in terms of how we can advance our academic careers on social media. That’s a limitation of having physicians spending more time educating online.”

More long-term solutions may require much larger investments of time and money by a larger entity: health care systems. Southwell said the current information/misinformation climate could be an ideal time for “reimagining” how communication systems function within a health care system.

“We need a lot of investment in this translational space, which I don’t think we have,” he said. “You start out worried about all of these patients running into misinformation, and you have to continue to think about that since patients are a part of the equation, but part of the story and the solution are our health care institutions. What are they doing, necessarily, to provide information?”

Improved in-person communication between oncologists and patients also can play a role in limiting a patient’s possible engagement with misinformation on social media.

In an October 2020 editorial he co-wrote in American Journal of Public Health, Southwell suggested an open-ended question such as, “What have you already heard or learned about your treatment/condition?” as a useful starting point.

“You’re respecting that the patient is seeking out their own information on their condition and also getting a quick beat on where they are looking,” Southwell said. “You’re also starting from a place where you’re not assuming or dismissing (their view) right away.”

Lending an empathetic ear is important, Southwell said, as is understanding that the source of their information may be someone important to them and not just something they came across on their social media feed.

“Maybe this came from their Aunt Edna, and they listen to everything she says,” Southwell said. “Getting some sense of the personal referral (is important) because now you know what you’re up against and you can tread lightly. ‘Well, my mother told me this’ or ‘my wife told me this.’ That’s probably going to carry some weight.”

Unlike traditional media, such as newspapers or television, social media is a two-way communication channel. Similarly, within a clinic, physicians who are adept at communication value the shared decision-making process between physician and patient.

“This includes a discussion of risk, benefits, alternatives and the patient’s preferences related to a medical decision,” Loeb said. “We published a study [in Journal of Medical Internet Research] using data from HINTS, a national survey, showing that patients who perceived a worse quality of communication with their health care provider were more likely to watch health-related videos.

“Bottom line: it is very important that patients have an opportunity to have their questions answered and that they are well-informed by their health care provider,” Loeb said. “Otherwise, it is natural that people will look to other sources for information.”