Published Jul 22, 2021
Social media continues to serve as the misinformation highway for bogus and potentially harmful claims about cancer, according to a new study published in the Journal of the National Cancer Institute.
“Of 200 total articles, 32.5% (n = 65) contained misinformation and 30.5% (n = 61) contained harmful information,” states the study. “Among articles containing misinformation, 76.9% (50 of 65) contained harmful information.”
Even more alarming may be the fact that these false and harmful posts had far more views and user engagement than the honest information being posted by users, which still made up an overwhelming majority of the content.
The study notes that the “median number of engagements for articles with misinformation was greater than factual articles” and the “median number of engagements for articles with harmful information was statistically significantly greater than safe articles.”
Dr. Keith A. Cengel, professor of radiation oncology at the Hospital of the University of Pennsylvania, previously spoke with Survivor Net about the spread of false information and how best to vet cancer claims, noting: “So the advice I’d give a patient is the World Wide Web is worldwide. Anybody who has a terminal can put information in there. Much of which is not well vetted, much of which is opinion.”
Dr. Cengel then explained that in addition to the “potential for misinformation” there are also “people who are miserable stay home a lot and write on the internet.”
He continued: “So a lot of times you will find horror stories beyond belief, that really make you very scared of your diagnosis and make you think that there is no hope.”
The best way to avoid this, according to Dr. Cengel, is to stick to websites that are vetted. Those include the websites of large cancer centers, well-known clinics, and government agencies such as the National Cancer Institute. Information appearing on any peer-reviewed channels is also generally trustworthy, he told Survivor Net.
CC Webster had spent 10 years at a top tier advertising agency marketing pharmaceutical brands and product portfolios when she was diagnosed with cancer, and even she struggled with what information she could trust online.
Her advice is to keep online searches narrow and focus on specific questions as opposed to combing the internet for information on the disease in general.
“I think there is an influx of information out there in the world. Sometimes it can be a dangerous thing for a new patient. I came into my cancer diagnosis as a relatively educated patient, and even I was still overwhelmed with the amount of articles, and therapies, and protocols that I found with a simple Google search,” Webster previously told SurvivorNet.
“It became very clear that information needed to be curated and made relevant for specific cancer cases. Especially when it came to supporting yourself through nontraditional ways. The internet and friends, they’re full of advice and full of ideas and recommendations, but it’s really important to again do your research and know that the sources you’re going to are verified and the information you’re getting is real and truthful and relevant to you.”
Dr. Jonathan S. Berek, director of the Stanford Women’s Cancer Center, provided an example of a story he frequently sees being misrepresented on social media while speaking with SurvivorNet about fake cancer news that has the potential to cause harm.
In this case, it was misleading and flat-out false claims about the HPV vaccination which resulted in the false narrative that there was some sort of controversy surrounding how and to whom it was being administered.
“If the question is, ‘Is there a controversy around getting HPV infection?’ The answer is, “it’s really a, uh, a pseudo-controversy, because the reasons that people object to it really aren’t realistic,'” he said at the time.
Dr. Berek then pointed out that there were no side effects and the vaccine was in fact “incredibly safe,” so there was no reason for patients to be in fear.
“It’s as safe as any vaccine has ever been. It’s highly-effective. It’s highly-predictive,” he noted.
“Some people say they’re concerned about it because they’ve called it a sex vaccine, that somehow it’s gonna encourage people to be sexually active. First of all, that’s not true. It’s an anti-cancer vaccine. And second of all, there is no data to support that contention. There are absolutely none. So it’s really based on fear, misinformation, disinformation, fake news so to speak.”
The best way to get accurate information is to check with your doctor about any cancer questions or concerns.
That is the advice of Dr. Skyler B. Johnson, assistant professor in the Department of Radiation Oncology at the University of Utah Huntsman Cancer Institute and author of the study.
“If it means that you’re refusing conventional cancer treatments, then it decreases your chance of cure and survival,” said Johnson.
“It’s all about being able to use social media wisely, and just be a little bit critical about the information you may be seeing online or hearing about from well-meaning family and friends.”