Monmouth County's Ask the Doctor November/December

Addressing the Challenges of Cancer Misinformation on Social Media

Misinformation about cancer is pervasive on the Internet and social media. Researchers are trying to understand its impact on patients and cancer care. You or someone you love has just been diagnosed with cancer. You’ve met with the doctor and your head is spinning. You’re over- whelmed and scared. Like many people these days, you turn to the Internet and social media for information. Someone you know points you to a scien- tific-sounding article or a video by a “medical expert” that offers new hope, perhaps by describing treatments that are “all natural” and don’t have unpleasant or serious side effects.

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And although the information may sound too good to be true, the site includes testimonials from patients or their family mem- bers who describe miraculous results. Scenarios like this are all too common, say oncologists, health communication experts, and the information specialists who field questions for NCI’s free Cancer Information Service (CIS). “People have been sharing inaccurate health information since the beginning of time,” said Wen-Ying Sylvia Chou, Ph.D., M.P.H., of NCI’s Health Communication and Informatics Research Branch (HCIRB). But the Internet and social media have made it far easier to share and spread health misinformation, Dr. Chou said. Indeed, a recent study found that of the most popular articles posted on social media in 2018 and 2019 on the four most common cancers, one in every three contained false, inaccurate, or misleading information. And most of that misinfor- mation about cancer was potentially harmful. Further, Dr. Johnson’s team found, people were more likely to engage with misinformation than with factual information. “A substantial proportion of the content on YouTube was potentially biased and/or misinformative,” and those videos got more views and thumbs-ups than videos containing accurate information, said Stacy Loeb, M.D., M.Sc., of the NYU School of Medicine, who led that study. For example, one popular video recommended injecting herbs into the prostate to treat cancer, which is unproven and potentially dangerous. More recently, other studies led by Dr. Loeb found similarly misleading information about prostate cancer on TikTok and Instagram. “It’s clear that cancer misinformation is a pervasive problem across social networks,” Dr. Loeb continued. More research is needed on the impact of online misinformation on decisions about medical care and on people’s health, she added. And effective strategies are needed to address the problem, she stressed. Solutions to this problem aren’t simple. But, according to several oncologists and health communication experts, health care providers can help by keeping the lines of communication open, listening to patients in a nonjudgmental way, work- ing with them as partners to make decisions about cancer screening and treatment, and providing them with suggested resources for more information. It’s also important to look at how people who are not experts evaluate specific claims on social media, Dr. Vanderpool said. Video, tone of voice, and even things such as color schemes can have a strong impact on how people process infor- mation, she noted. Doctors who diagnose and treat cancer have been dealing with misinformation for a long time. And some misinforma- tion can lead patients to express doubts, hesitancy, or fear of taking proven treatments, said Lidia Schapira, M.D., of Stan- ford University, an oncologist who specializes in treating breast cancer. In these situations, listening to people’s concerns with empathy and respect is critical, she emphasized. Dr. Schapira starts “by asking questions, listening, and being nonjudgmental.” From there, she tries to identify oppor- tunities for negotiation. “For example, I will ask the patient to imagine the consequences of taking or not taking such a treatment, and then try to find some alignment of purpose—such as achieving a cure or good quality of life—and com- mon ground.” Continued on page 25...

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