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Viewing cancer misinformation on social media negatively influenced patients’ decisions and adversely affected their mental health, according to a new study published in the journal Cancer. While online social networks can be useful resources for cancer patients, they’re also scattered with potentially dangerous misinformation.
Researchers at Huntsman Cancer Institute at the University of Utah (U of U) created a resource for scientists that lays the foundation for building clinical and patient-friendly tools called the Online Cancer Nutrition Misinformation (ONC-M). The tool tracks and organizes cancer misinformation that comes from social media.
Echo Warner, PhD, MPH, researcher at Huntsman Cancer Institute and assistant professor of nursing at the U of U, asked patients and caregivers how they used social media during their cancer experiences. “The benefits of their social media use were mired by exposure to cancer misinformation. They were met with misinformation from many sources, all the way from well-intentioned friends and family to shadow scams selling ‘cancer cures’ to the highest bidder,” Warner says.
ONC-M provides a way for researchers to document how exposure to health misinformation online influences patients and caregivers.
“It’s the first framework to document the process by which exposure to health misinformation online influences patient and caregiver health behaviors and health outcomes,” says Warner. “Before now, the lack of a clear conceptual process, and the factors that influence that process, has been a major roadblock in the study of online health misinformation.”
The ONC-M describes how cancer misinformation is organized, and also creates potential pathways linking misinformation exposure, health behaviors, and cancer health outcomes. Researchers identified several primary cancer misinformation categories and factors that associate with each type of claim. Researchers found untrue claims about cancer prevention, treatment, and cures. These claims were backed by false disclaimers, anecdotes, and misinterpreted scientific articles.
“While still somewhat early in refinement, ONC-M has broad applicability and likely extends beyond cancer-related misinformation to other health domains as well,” says Warner. “We plan to test each part of the framework and study new ways of using technology to measure how much cancer patients are exposed to misinformation online.”
Warner recommends discussing any treatment or therapy questions with healthcare providers. Patients can also use an information quality tool to help identify potential biases, financial incentives, and misleading content about cancer treatments or therapies. One example is the CRAAP test.
The study was supported by the National Institutes of Health/National Cancer Institute including P30 CA042014, the University of Arizona Cancer Center Cancer Health Disparities Training Program (T32CA078447), University of Arizona College of Nursing Eleanor Bauwens’s Research Award, University of Arizona Postdoctoral Research Development Grant, the U.S. Department of Agriculture, Agricultural Research Service under Cooperative Agreement No. 58-3092-0-001, the MD Anderson Cancer Center Support Grant (P30CA16672), the Center for Energy Balance in Cancer Prevention and Survivorship, Duncan Family Institute, and Huntsman Cancer Foundation. Key collaborators included Margaret Raber Ramsey, DrPH, Baylor College of Medicine, Tracy Crane, PhD, University of Miami Sylvester Comprehensive Cancer Center, Terry Badger, RN, PhD, University of Arizona College of Medicine, and Karen Basen-Engquist, PhD, MD Anderson Cancer Center.