PROVIDENCE, Rhode Island -- Misinformation about cancer is prevalent on social media, spanning across platforms and malignancy types, according to a presenter at the COSMO Meeting.
"Marginalization and distrust in the health care system may drive patients and families to misinformation exposure through alternative online sources," Stacy Loeb, MD, MSc, PhD(Hon), professor of urology and population health at NYU Langone Health and Manhattan Veterans Affairs. "This, in turn, can have negative consequences for cancer care and the patient-physician relationship, so a multifaceted strategy is needed to combat misinformation."
The majority of U.S. adults use social media, with YouTube the most widely used platform, Loeb said.
Research suggests social media allows for more rapid and broader dissemination of both misinformation -- incorrect or misleading information that conflicts with best available scientific evidence -- and disinformation, meaning deliberately deceptive.
Johnson and colleagues reviewed the 200 most popular English-language articles about four cancer types -- breast, colorectal, lung and prostate -- shared on social media. Their results, published in 2022 in Journal of the National Cancer Institute, showed approximately-one third contained misinformation (32.5%) and contained harmful information (32.5%).
"Worst of all, what we see in this paper -- and our studies, as well -- is more engagement with misinformative vs. accurate information, and with harmful [information] vs. safe," Loeb said.
Loeb and colleagues have explored the prevalence of misinformation about prostate cancer on social media. Among their findings: 42% of the top 150 videos on YouTube included misinformation; 41% of posts on Instagram and TikTok with objective information was misinformative; 15% of pins in a search of Pinterest for prostate cancer had misinformation; and 13% of podcasts included moderate to high misinformation.
"If a lay health information consumer is searching on these [platforms] for information about cancer, the probability that they will come across something that contains misinformation without any direction is extremely high," Loeb said.
Online misinformation about cancer may relate to a variety of topics, ranging from causes, symptoms and screening to the potential benefits of supplements or certain diets.
Potential impacts include delays in medical care, unrealistic expectations, dangerous medication interactions and economic harm.
This can lead to distrust between patients and physicians, and also waste considerable time during patient visits.
"If we need to discuss the next steps [in treatment] but we spend half of the encounter dispelling myths, that can pose a challenge for providing informed decision-making," Loeb said.
Clinicians can correct misinformation through education, Loeb said. This entails telling patients which information is incorrect and why, then emphasizing the importance of seeing quality information based on science.
Several entities can be involved in the effort to combat misinformation, Loeb said. For example, health care providers and community health workers can promote health literacy; health systems can conduct community outreach, particularly to historically marginalized groups; and professional societies can take disciplinary action against health care providers who spread misinformation.
Future studies of misinformation should aim to understand the psychological drivers, identify vulnerable populations that can be targeted with interventions, and develop standards regarding when and how best to respond.
More research also is needed to evaluate the real-world consequences of misinformation, Loeb said.
"There are many more studies documenting how much misinformation is present [than] the downstream effects," Loeb said.