A new study posted online today in Journal of the National Cancer Institute reports that a third of the most popular cancer treatment articles on social media contain misinformation. In addition, the vast majority of this misinformation has the potential to harm cancer patients by supporting approaches that could negatively affect the quality of their treatment and their chances of survival. The study also showed that articles with misinformation received more attention and engagement than articles with evidence-based information.
The Internet is an important source of health information and misinformation is increasing in many types of health conditions. This is an urgent challenge as it can lead patients to make decisions that adversely affect their survival or outcomes.
Skyler Johnson, MD, a physician-scientist at the Huntsman Cancer Institute (HCI) and an assistant professor of radiation oncology at the University of Utah (U of U), led the study. Johnson’s interest in the area came after work he completed early in his career showed a higher risk of death in patients who used unproven approaches to treating cancer as an alternative to traditional, evidence-based treatments. This research led Johnson to several discussions with patients, doctors, researchers, and journalists. In the course of those conversations, Johnson found a recurring theme about the role online media, especially social media, played in spreading inaccurate cancer information. Additionally, in his clinical practice at HCI, where he cares for people with cancer, Johnson often heard from patients who had questions about articles they had seen on social media.
He and the research team wanted to better understand the amount and type of cancer information on social media. The research team included experts in cancer treatment, health outcomes, and communication. They convened panels of medical experts to review and rate the claims made in 200 of the most popular articles on social media sites. For this study, researchers focused on articles on breast, prostate, lung, and colon cancer.
“We have found that there is clearly misinformation in cancer articles on social media, and the vast majority of those articles contain harmful information,” says Johnson.
The team’s results showed how common it is for cancer patients to receive misinformation. Out of 200 articles analyzed, 33% contained misinformation. Of these, 77% contained information that could negatively affect patient outcomes. Johnson noted that after reviewing articles, he has great concerns about how to distinguish which articles are reliable and which are not.
Johnson says he understands why patients search for information online, including through social media platforms. “Having cancer is a unique and vulnerable situation. Patients are dealing with a new disease. They want to be in control of their own health and do whatever it takes to keep hope alive. You will experience a deluge of new information when diagnosed, including through social media. Some patients seek information, and some information is shared with patients by well-meaning family members and friends. ”
He advocates that doctors maintain open channels of communication with their patients. In his practice, he informs patients that they are likely to encounter misinformation about their cancer online. He encourages his patients to speak to him if they have any questions about information they see online or on social media related to their cancer.
Johnson hopes this research is just the beginning. He aims to identify predictors of misinformation and harm on social media to help doctors and patients better understand and navigate this challenging topic.
“We need to address these issues head on,” says Johnson. “As a medical community, we cannot ignore the problem of cancer misinformation on social media or ask our patients to ignore it. We need to empathize with our patients and help them when they come across this type of information. My goal is to answer their questions and provide cancer patients with accurate information that will give them the best chance of getting the best result. ”
Johnson recognizes the critical efforts of the entire study team, including senior author Angela Fagerlin, PhD, HCI cancer researcher and Professor and Chair of Population Health Sciences at U of U; Jonathan Tward, MD, PhD, HCI Physician-Scientist and Professor of Radiation Oncology at U of U, who organized the process of conducting medical opinions on the items; and Laura Scherer, PhD, a misinformation researcher at the University of Colorado School of Medicine. The research was funded by the National Institutes of Health / National Cancer Institute P30CA042014 and the Huntsman Cancer Foundation.
Public Resource Notice: The Huntsman Cancer Institute’s Cancer Learning Center is a free service for health professionals and the general public with questions about cancer, including questions about articles they may see on social media. She can be reached toll-free at 888-424-2100 or by email [email protected] The services are available in English and Spanish.
Via the University of Utah’s Huntsman Cancer Institute
The University of Utah’s Huntsman Cancer Institute (HCI) is Utah’s official cancer center. The cancer campus includes a state-of-the-art cancer specialty hospital, community clinics, a mobile screening program and two buildings for cancer research. HCI treats patients with all forms of cancer and is recognized by US News and World Report as one of the best cancer hospitals in the country. As the only Comprehensive Cancer Center designated by the National Cancer Institute (NCI) in Mountain West, HCI serves the largest geographic region in the country and attracts patients from Utah, Nevada, Idaho, Wyoming and Montana. More genes for hereditary cancers have been discovered at HCI than at any other cancer center in the world, including genes responsible for hereditary breast, ovarian, colon, head and neck cancer and melanoma. HCI maintains the Utah Population Database, the largest genetic database in the world, containing information on more than 11 million people linked to genealogies, health records and vital statistics. HCI was founded by Jon M. and Karen Huntsman.