Healthcare professionals need to be engaged in research to better understand cancer misinformation, how to combat it, and how to reach the population most affected by online health misinformation, according to a Collaboration for Outcomes Using Social Media in Oncology (COSMO) “call to action.”
The increase in online misinformation has become a “pressing concern” within healthcare as a whole, and oncology, in particular, wrote Eleonora Teplinsky, MD, of Valley-Mount Sinai Comprehensive Cancer Care in Paramus, New Jersey and colleagues from COSMO.
Health consumers, with varying degrees of health and scientific literacy, now have unlimited access to a multitude of online cancer-related sources of information, much of which may not be reliable or trustworthy, they stated in a JCO Oncology Practice review.
Skyler Johnson, MD, of the Huntsman Cancer Institute at the University of Utah in Salt Lake City, noted that this call to action, “is important because it helps to establish the need to move on in terms of the kind of research we should be focusing on, and the ways in which we can help our patients sift between what is accurate and what is inaccurate information.”
Johnson, who was not involved in the current review, co-authored a 2021 Journal of the National Cancer Institute study that found one-third of the most popular cancer treatment articles on social media contained misinformation. They also found that most of that misinformation was potentially harmful enough that it could lead to adverse consequences such as treatment delays and/or adverse interactions with the current standard of care.
Teplinsky and colleagues offered examples of how misinformation has had a pervasive impact on oncology, such as data from a 2021 European Urology showing that almost 70% of bladder cancer content on YouTube was of moderate-to-poor quality. A 2019 European Urology study showed that there is significant negative correlation between scientific quality and viewer engagement among prostate cancer informational videos on YouTube, with users more likely to view poor quality or biased videos rather than higher-quality information.
Johnson and colleagues found a similar trend in their study: “Articles that have more misinformation and have harmful information are actually shared more online or they get more engagements online, than information that’s actually accurate and safe,” he told MedPage Today.
Consequently, “medical misinformation can spread quite rapidly (or go viral), particularly because most social media platform algorithms push content with more views or engagement,” Teplinsky and colleagues observed. “Thus, online cancer information is inconsistent and sometimes at odds with published data and expert opinions. It is no wonder that patients may become confused and unsure where to turn and who to trust.”
So what can providers do to help oncologists and other health providers respond to misinformation? The authors’ suggestions included:
- Remind health professionals that scientific literacy is a “significant problem” in the U.S. and a driver of the spread of misinformation; “health care providers should view the Internet as a collaborative tool that has the potential to assist patients and care partners in better managing their illness, especially when we use it to speak in plain language to our constituents, thereby making complicated studies more accessible”
- Give health professionals the resources and training in health communication and social media use in order to disseminate scientifically vetted heath information
- Encourage cancer professionals to proactively raise awareness of low-quality information — or even false information — while sharing and educating patients about high-quality information
Johnson said individual oncologists need to be aware that misinformation is a major issue that virtually all patients will encounter.
“I think we know that the vast majority of cancer patients go online to get more information about their cancers,” he said. “So we can’t be oblivious to the fact that people are going online. We have to recognize there is a lot of information out there that is difficult to discern, whether it is true or false. And then we need to advise our patients that they are going to encounter information that is going to be potentially misleading, and even harmful.”
Doing so will open up lines of communication with patients so that they feel comfortable bringing up the question of online cancer information in the first place, Johnson said.
“I think one of the things that is pretty clear is that some patients don’t even want to tell their oncologist, for fear of judgment, that they are interested in an unproven treatment,” he said. “As oncologists, we have to face the fact that our patients may be open to these kinds of things; let them know we want to work with them; help them make the best decisions they can; and just establish that we have common goals, which is to cure the cancer and do it with as few side effects as possible.”
Teplinksy and colleagues pointed out that the “role of confirmation bias and the echo chamber effect has been clearly demonstrated in discussions around vaccine hesitancy (in general), which predated the COVID-19 pandemic (and the issues surrounding COVID-19 vaccines specifically),” but that that discussion was “outside the scope of this paper.”