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Skyler Johnson, MD, was attending medical school in 2011 when his wife, Laurie, was diagnosed with cancer.
“The first thing you do is start looking for information and answers online,” Johnson says. “As we searched, it became clear that there was a ton of misinformation.”
After six months of treatment, Laurie was declared cancer-free. But this series of events changed something in Johnson, now a Huntsman Cancer Institute physician-scientist and assistant professor of radiation oncology at the University of Utah.
“I realized I was lucky. As I progressed in my medical training, I could recognize misinformation. Not only that, I saw people were actually taking harmful advice from well meaning friends and family that led directly to adverse cancer outcomes. I saw patients putting themselves in dangerous situations because of misinformation. They were choosing to use unproven treatment methods and dying from cancers with high survival rates.”
These experiences charted Johnson’s path in medicine, ultimately leading him to design a 2017 research study, “Use of Alternative Medicine for Cancer and Its Impact on Survival.”
The study’s findings indicated patients who relied on unproven therapies were five times more likely to die sooner than those receiving traditional treatments, such as radiation, immunotherapy, chemotherapy, and surgery.
“I was up late one night and, on a whim, posted an acronym online. It blew up on Twitter and then ended up in a book on breast cancer treatment decision-making,” Johnson says. “It may be a little jokey, but it helps drive home the point that you have to be vigilant with the type of information you read online.” The acronym? C-R-A-P.
According to Johnson, most sources of misinformation, whether seen online or spread by word of mouth, share four attributes:
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C
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Conspiracy theories or claims too good to be true |
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R
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Requests for money, either for a treatment product or access to information |
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A
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Anecdotes to support claims as opposed to real data |
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P
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Publishers’ websites from questionable sources and end in .com rather than .org or .edu |
This research led to another study published in July 2021 in the Journal of the National Cancer Institute. Data showed 33% of the most popular articles on social media about cancer treatment contain misinformation. In addition, 77% of those articles contained information that could negatively impact the quality of a patient’s treatment and chances for survival. The study also showed that articles containing misinformation garner more attention and engagement than articles with evidence based information.
“The internet is a major source for health information, and misinformation is growing among many types of health conditions. This is an urgent challenge because it can result in patients making decisions detrimental to their survival or outcomes,” Johnson says.
Johnson hopes this research is just the start. He wants to identify predictors of misinformation and harm on social media to help physicians and patients better understand and navigate this challenging issue.
“We created a database that evaluates all the cancer articles from our first project and asks a number of questions: Does it come from a reliable publisher? Is it from a traditional news source? Does it use the correct medical terminology?” Once those questions are answered, Johnson and his team intend, through statistical analysis, to determine why certain themes and words are believed. The goal is to help cancer patients identify the most trustworthy sources of information.
My goal is to help answer their questions and provide cancer patients with accurate information that will give them the best chance for the best outcome. We can do all the research in the world, but unless patients are willing to listen and trust us, it’s all for naught.
- Skyler Johnson, MD
“We have interviewed around 700 patients, looking at their exposure to misinformation online and what sites they are visiting. This data should help us determine which demographics are the most susceptible to, and targeted by, this content.”
Johnson acknowledges the patient-doctor relationship has changed and he understands why patients seek information online.
“Medicine is a team-based approach. It used to be paternalistic—doctors would tell you what to do and, as a patient, you’d do it. That’s not how it is anymore. Having cancer is a unique and vulnerable situation where patients feel fear, anxiety, and a loss of control. In order to get some of that control back, patients take a more active role in their care by seeking out information.”
Johnson advocates for physicians to maintain open communication with their patients. In his practice, he lets patients know they are likely to encounter misinformation about cancer online, including social media.
“We need to address these issues head on. We must empathize with our patients and help them when they encounter this type of information. My goal is to help answer their questions and provide cancer patients with accurate information that will give them the best chance for the best outcome. We can do all the research in the world, but unless patients are willing to listen and trust us, it’s all for naught.”
Huntsman Cancer Institute’s Cancer Learning Center is a free service for patients and the public. Get accurate information to cancer questions at 1-888-424-2100 or cancerinfo@hci.utah.edu. Help is available in English and Spanish.