The Millstone Times January 2022

Addressing the Challenges of Cancer Misinformation on Social Media Continued from page 26... These conversations are “all goal oriented, with the goal being what’s best for the patient,” she continued. And often, she said, multiple conversations are needed. Organizations like NCI and the American Society of Clinical Oncology, which provide expert-reviewed information about cancer for patients and families, can help counter misinformation by serving as a trusted source of science-based information, Dr. Schapira said. Many patient advocacy groups also provide reliable cancer information that is expert reviewed, she said. “One of the main benefits of providing and having access to good information rather than misinformation is that the patient and family are empowered to have a better discussion” with their doctors, Dr. Schapira noted. Ideally, Dr. Loeb said, doctors and patients should work together to make decisions about cancer care. That includes “discussing the benefits, risks, and alternatives for a given procedure or treatment, as well as discussing the patient’s preferences,” she said. Such an approach, known as shared decision making, is especially important “in situations where there are multiple options and it’s not known what the best option is,” Dr. Loeb noted. People who provide cancer information for the public echoed many of these themes. “We get a lot of questions from people with advanced cancer who are looking for things other than standard treatment options,” said Cancer Information Service resource specialist Laura Rankin. They may have read about an unproven treatment such as an herbal remedy or high-dose vitamins online, or a friend or relative may have told them about it. How to Find Cancer Resources You Can Trust One important goal CIS has is “to help people understand how to evaluate whether information they find online is credible,” said Deborah Pearson, M.P.H., a former oncology nurse who helps oversee CIS. The Using Trusted Resources page on NCI’s website, which CIS helped develop, “gives people lots of criteria to use so they can be more informed consumers of information,” Rankin said. When people contact CIS, “we try to understand where the person is coming from, what is motivating them. People may be desperate and vulnerable,” especially if they have limited treatment options, Pearson said. In addition to providing information, CIS staff can help people brainstorm about how to talk with their doctor. “If their oncologist is too busy, we ask if there is a nurse or a primary care doctor they could talk with,” said Lauren Tarry, a supervisor at CIS. “Some dietary supplements could interact with your treatment, so it’s always important to talk with your doctor” before taking something, she noted. Using Social Media for Good Social media can also be part of the remedy for cancer misinformation, Dr. Loeb said. “It’s important for physicians and other experts to actively engage online to share evidence-based health information and ensure that the latest scientific findings are reaching the public through these large networks,” she said. Dr. Loeb is active on Twitter and also works with professional societies and foundations in prioritizing, planning, and reviewing their social media content for patients. She started a Twitter-based journal club with the Prostate Cancer Foundation with the hashtag #ProstateJC, where scientists can discuss new research in that field. And that has “helped foster scientific discussion about new research that is open to patients and the general public as well as international experts with a range of expertise,” she said. In addition, Dr. Loeb noted, “all of the major medical conferences now have dedicated social media hashtags. Those are a great way for patients and the public to follow along with the latest research that’s being shared.” Medical societies, journals, and organizations like NCI also are active on social media and are sources of reliable information. Many questions remain about social media and cancer misinformation—not to mention misinformation on other health topics, such as COVID-19. For instance, Dr. Vanderpool said, “We also need more studies on the health impacts of cancer misinformation through social media, such as not taking or completing your cancer treatment, parents forgoing human papillomavirus (HPV) vaccination for their children, or not getting screened for cancer.” Learning the origins of misinformation on social media and the reasons behind sharing it are also critical for efforts to limit its spread, Dr. Chou said. For example, she said, “is there a profit motive or a group that’s trying to cause confusion or chaos?” The ability to access health information online is important and empowering and helps patients be proactive in their own care, experts agreed. But because so much information is now available online, the burden of deciding what is true or false is increasingly falling on individual consumers, Dr. Chou said. Furthermore, she noted, “the algorithms developed and perpetuated by the social media platforms affect what each person is likely to see on social media.”

40 The Millstone Times

January 2022