I know what it’s like to be diagnosed with a terrifying, complex, and potentially life-threatening medical condition — I’m an 11-year survivor of endometrioid adenocarcinoma. When I first learned that cancer had invaded my body, I was shocked and devastated. There was also the concern that as a newly diagnosed patient I had insufficient knowledge about cancer, or more specifically gynecological cancer. I’d never even heard the term endometrioid adenocarcinoma, so I knew next to nothing about my disease or how it would be treated. But then when I struggled on my own to find information or to learn more, I was often confused and felt overwhelmed.
I discovered, much to my dismay, that those of us searching for information about cancer are buried by an avalanche of false claims, from well-meaning but dangerous advice to callous exploitation by charlatans. I was at the most vulnerable point in my life and I felt disillusioned, especially by much of what I was exposed to online or on social media.
One 2016 report found that more than half of the most widely shared cancer articles on Facebook consisted of medically discredited claims. A more recent study examined the 50 most popular social media articles on the four most common types of cancers. The review found dangerous misinformation in more than 30 per cent of the articles analyzed and, perversely, that these articles garnered more online engagement than factual articles.
I’ve made it one of my personal goals to help fight the abundance of misinformation that is present regarding cancer. Misinformation in the form of dangerous half-truths and lies is often spread uncontrolled, either through deliberate malice or woeful ignorance. As a cancer survivor, I have particular distain for individuals, groups or organizations that deliberately attempt to exploit our vulnerability—it’s morally repulsive that they endeavor to benefit from our plight. We as cancer patents have access to millions of informational resources, but we’re forced to remain ever vigilant as we try to distinguish facts from a tide of lies and falsehoods.
How to Recognize Cancer Quacks
Use these important guidelines for spotting all categories of misinformation online.
- Consider the primary source. Click away from the story you are reading to investigate the complete website, its mission and its contact information.
- Read beyond the link or the first few lines of an article. Sometimes headlines can be outrageous in an effort to get clicks. What’s the whole story?
- Confirm the author is reliable. Perform a quick search to get information on the author. Are they credible? Are they real?
- If an article has listed supporting sources you should investigate by clicking on those links or searching for the sources. Determine if the source material that is given actually supports the content of the story.
- Check the date. Reposting old news stories doesn’t mean they are still relevant to current events. New details or updated evidence on a topic are always emerging.
- Is it a joke? If it is too outlandish, it might be intended as satire. Research the site and author to be sure.
- Biases can influence how someone responds to an article, so consider if your own beliefs or perspective could be affecting your judgement. Remember that most social media platforms suggest stories that match a person’s interests, opinions and browsing habits.
I still believe that ultimately the ability to access health information online is important and empowering and helps patients be proactive in their own care. But because so much information is now available, the burden of deciding what is true or false is increasingly falling on individual consumers, in this case cancer patients and their loved ones.
Health care professionals, research and health care organizations, government agencies, as well as technology and social media companies all need to take more responsibility and play a role in addressing the problem. They must try to help individuals be more critical consumers of information. To this end, many consumer and patient advocates argue that social media and health literacy opportunities should be incorporated into the K–12 and college curricula.
Fortunately, there are lessons that can be learned by the cancer community from interventions to counter scientific conspiracy theories, especially efforts to counter antivaccine propaganda. Previous studies indicate that improved communication of the scientific consensus can overcome some popular conspiratorial thinking on a wide variety of topics, from vaccines to climate change.
We can take the “hidden” cure for cancer narrative as one example. The scientific and medical communities can counter this narrative by explaining that, far from being a monolithic entity, cancer is not one illness but an entire family of more than 200 diseases. Furthermore, these illnesses differ greatly between tissue type and even individual. How these malignancies respond to different interventions varies hugely, rendering the idea of a single “magic bullet” for all these myriad types exceptionally unlikely. The benefit of this approach is that it takes concerns seriously while still showing the concerns to be unfounded, ultimately improving understanding.
David Robert Grimes; The Struggle against Cancer Misinformation. Cancer Discov 1 January 2022; 12 (1): 26–30. https://doi.org/10.1158/2159-8290.CD-21-1468
Elia Ben-Ari; Addressing the Challenges of Cancer Misinformation on Social Media. 9 September, 2021; published by the National Cancer Institute.
FactCheck.org’s 2016 article How to Spot Fake News
I felt the same way when I was first diagnosed with breast cancer. There is so much information out there, but sorting through it is a process, and I never felt like I had enough time to ask my doctor everything I wanted to ask. I ended up relying on my nurses quite a bit and making connections with other young adult survivors online, but I like the idea of sorting through reliable sources online, too. Thanks for sharing!