Misinformation in the Cancer World
- In July 2021, the U.S. surgeon general issued an urgent advisory warning the American public about the “threat of health misinformation.” And an article from The New England Journal of Medicine was recently published to empower future and current clinicians to actively fight against the misinformation crisis, but patients and the general public can also play a part in solving this issue.
- It's important to look for cancer information from reliable sources that are up-to-date. You can check if the information you’re seeing is legitimate by asking a healthcare professional, checking the date of the information, seeing if a NCI-Designated Cancer Center is involved with the information, looking for a major medical journal to be cited with the information or in support of the information, seeing if other reputable researchers have come to the same conclusions, questioning whether the information is too good to be true, double checking the facts if you’re seeing the information coming from a celebrity or influencer and visiting the new Cancer FactFinder website if the subject matter you’re seeing is about something potentially causing cancer.
- You should always double check that the information you’re seeing is legitimate before sharing on social media.
In July 2021, the U.S. surgeon general issued an urgent advisory warning the American public about the “threat of health misinformation.” This advisory specifically highlighted the dangerous spread of misinformation surrounding the topics of the pandemic and the COVID-19 vaccine, but its message rings true for cancer misinformation as well.
Read More- Social-media companies should be “held accountable” for the spread of medical disinformation on their platforms, or at least remove any verification status from users who do spread misinformation. “Ideally, [these users] should face sanctions for spreading false information, including the loss of their account privileges,” the article reads.
- Strategies to protect health care professionals from being attacked when trying to publicly combat misinformation should be put into place. One way to do this is for health care workers to “adopt a group identity.” One example of this can be seen with the Illinois Medical Professionals Action Collaborative Team (IMPACT) that arose at the beginning of the pandemic to create infographics to dispel misinformation. Another way to solve this issue is for employers and other organizations to counsel and support health care professionals when they receive backlash on social media. “Our research, conducted before the Covid-19 pandemic, revealed that one in four physicians had been attacked on social media,” the article reads. “The most common reason was that they had posted advocacy-related content, particularly about vaccines.”
- Clinicians should be trained on how to effectively dispel misinformation. “For example, one popular messaging tactic involves presenting a myth first, followed by the relevant facts,” the article reads. “Yet studies show that this approach can backfire by increasing the retention of misinformation, since cognitive biases favor the recall of the first content presented. Instead, clinicians can debunk misinformation by means of the three-step process used by climate scientists, which involves first stating a fact, then stating the related myth, and finally explaining the fallacy or why the myth is false.”
- Medical schools and universities should teach students ways to effectively communicate scientific information, inform them how to identify and debunk misinformation and explain how people can be predisposed to believing misinformation because of biases. “Methods such as SIFT (stop, investigate the source, find trusted coverage, and trace to the original context), which was developed by librarians, can be used to train clinicians to identify trusted sources of information, and health care professionals can then share these strategies with their patients,” the article says.
What Can Patients Do to Combat Cancer Misinformation
Dr. Stacy Loeb, a urologic oncologist and professor of urology at NYU Grossman School of Medicine, has previously spoken with SurvivorNet on the topic of cancer misinformation. And Dr. Loeb, herself, has also tried to inform the public about potential cancer misinformation online by studying the quality of online cancer information. Along with other researchers at NYU Grossman School of Medicine and NYU Langone's Perlmutter Cancer Center, she found that a significant amount of bladder and prostate cancer content on YouTube is not up to snuff.
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"This topic of misinformation has been in the news a lot lately," Dr. Loeb previously told SurvivorNet. "However, relatively less attention has been paid to the quality of online information about cancer, so that was the gap that we were trying to fill with these studies."
Dr. Loeb said she understands patients want to seek out detailed information online, but it's best to work with your healthcare team to get recommended resources.
"It's very reasonable that patients and their families may want more information than is possible to obtain in the clinical encounter," Dr. Loeb said. "We all feel the time pressure, and getting the recommended resources from your healthcare team can be a great way to help navigate through this sea that is fraught with bias and potentially misinformative content."
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Dr. Loeb recommends patients and health care professionals take the following actions to avoid the spread of cancer misinformation:
- Patients and family members should check the source and date of information they've found online. Guidelines change and new options become available all the time, so outdated information may be harmful or incorrect.
- Patients should ask their providers for recommendations on where to find additional information on their cancer.
- Healthcare providers should "actively engage in public and social media in order to help fight this problem."
- Healthcare providers should also provide resources for patients seeking additional information.
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It can also be helpful to remember what to look for when you’re searching online for quality cancer information. Here are some SurvivorNet tips to consider while you’re surfing the web and trying to decide whether the information you find is trustworthy:
- Is a NCI(National Cancer Institute)-Designated Cancer Center involved with the information? If so, this is a good sign. There are 71 NCI-Designated Cancer Centers in the United States. Examples of these institutions include the Stanford Cancer Institute (SCI) in California, the Dana-Farber/Harvard Cancer Center in Massachusetts, the Memorial Sloan-Kettering Cancer Center in New York, The University of Texas MD Anderson Cancer Center in Texas, the Massey Cancer Center in Virginia and the Case Comprehensive Cancer Center in Ohio.
- Is a major, respected medical journal cited with the information? If yes, this is also a good sign. Examples of such medical journals include The New England Journal of Medicine, The Lancet, The Journal of Clinical Oncology, and the Annals of Oncology.
- Is the research presented repeatable by other independent researchers? What we mean by this is for you to consider whether or not the research you’re looking at has been reproduced and still created the same results. Repeatability is important when it comes to cancer research, or any research for that matter, because it establishes its validity. If you don’t see that other researchers have come to the same conclusions after the same experimentation previously, it’s likely that this research is at very early stages. And research needs to be thoroughly tested to be deemed reliable and that can take a long time.
- Consider whether the information sounds too good to be true. We don’t mean to be pessimists, but if you’re seeing claims of “breakthrough cures” in foreign countries or something similar, you should really consider whether what you’re reading about is legitimate. If it were legitimate, top cancer centers, well-established researchers, reliable media outlets would be circulating or at least considering the news.
- If you’re seeing celebrities or influencers pushing medical cures or groundbreaking information on social media, think twice. Why are they pushing this information? Is there a financial incentive? And are they citing respected medical journals or an NCI-Designated Cancer Center in the process? If the information seems unsourced, we recommend doing further research on the claims they are making to try to find them in a more reliable setting (like in a respected medical journal or in an article supported by a NCI-Designated Cancer Center, for example).
- Check out the new website called Cancer FactFinder if the subject matter you’re seeing is about something potentially causing cancer. Experts from the Dana-Farber/Harvard Cancer Center and the Harvard T.H. Chan School of Public Health recently created this website to help people find reliable information on things that do and do not cause cancer.
And, lastly, if you come across cancer-related information, or any health information, on social media try to consider the validity of the information before sharing. You can check for sources, do outside research and ask a medical professional if you’re looking at something and wondering whether or not its valuable information to share. It’s imperative we all do our part to try to combat the health misinformation crisis.
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