Researchers Pilot Strategy to Combat Rampant Cancer Misinformation

Most cancer patients encounter misinformation about treatments, often without trying, according to a study published Sept. 6 in the Journal of Cancer Education. The research team at the University of Florida reported that 93% of surveyed patients had been exposed to at least one type of cancer treatment misinformation, highlighting the need for tools to identify and address unproven claims.

Cancer treatment misinformation — defined as unproven or disproven treatments, myths, or misconceptions — can erode trust between patients and doctors, delay evidence-based treatment, and ultimately worsen outcomes. Patients are particularly vulnerable in the months following a diagnosis when they often feel overwhelmed by new information and are facing initial treatment decisions. Patients who seek out cancer-related information online often do not discuss what they discover with their physicians, creating a gap in clinical communication, noted the researchers. When that gap develops, it can affect psychosocial outcomes and reduce the acceptance of, and adherence to, evidence-based treatments, they wrote in the introduction of their study.

Naomi D. Parker, Ph.D.

The study was conducted by first author Naomi D. Parker, Ph.D., assistant scientist at the University of Florida’s Department of Health Outcomes and Biomedical Informatics, and senior author Carma Bylund, Ph.D., professor and associate chair of education in the same department, and colleagues. The researchers surveyed 110 UF Health patients who had been diagnosed with lung, prostate, breast or colorectal cancer within the past six months. The survey, known as the Exposure to Cancer Treatment Misinformation (ECTM) tool, was designed to capture the type of misinformation patients had heard, its source, and whether it was encountered through active searching or more passive exposure.

The results showed that 93% (n = 102) reported hearing about at least one form of cancer treatment misinformation and that most (79%) had encountered at least one cancer myth or misconception identified by the National Cancer Institute.

Notably, most exposure occurred passively, through conversations with friends and family rather than actively seeking out cancer-related information themselves. Patients also often encountered misinformation on the internet via social media. According to Parker, exposure to misinformation is often unintentional: “You’re not necessarily seeking out if vitamin C may be a cure for cancer, but you start being fed that content,” she noted in a news release.

In the conclusion of their paper, Parker and her colleagues noted that their findings about the prevalence of “scanning” behaviors may mean that the research findings into information seeking about cancer treatments may have "limited applicability" in understanding the entirety of cancer patients’ exposure to treatment misinformation.

“Clinicians should assume when their patients are coming to them for a treatment discussion that they have been exposed to different types of information about cancer treatment, whether or not they went online and looked it up themselves,” Bylund said in the news release.

Despite the high prevalence of misinformation, few patients reported raising these claims with their oncologists. The researchers are now working with oncologists to pilot an “information prescription” initiative to guide patients toward evidence-based resources, such as the American Cancer Society. The hope is that such tools can help clinicians address misinformation proactively and guide patients toward trustworthy information sources.

The findings underscore the value of the ECTM survey as a way to measure the scope and patterns of misinformation exposure. The University of Florida team plans to validate the tool in more diverse populations and to evaluate interventions designed to limit the influence of misinformation on cancer treatment choices.