One of the first things a patient just diagnosed with cancer might do is look for more information online, especially regarding alternative therapies.
In a search on Amazon, for example, a seemingly endless list pops up with every title imaginable, including provocative gems such as Curing Cancer With Carrots and Proof for the Cancer-Fungus Connection. But how scientifically sound are these offerings?
It’s a question that troubles law professor Timothy Caulfield, who is part of a team that received a Canadian Cancer Society research grant to examine how cancer misinformation spreads online and come up with ways to ensure Canadians receive information from reliable, evidence-based sources.
“Right now, it’s ugly,” says Caulfield, the director of the U of A’s Health Law Institute and Canada Research Chair in Health Law and Policy. “What you get when searching is just filled with misinformation and books that have demonstrably false claims. Unfortunately, unproven cancer therapies have become a massive industry.”
The project team is led by Cheryl Peters, a senior scientist in cancer prevention at the BC Centre for Disease Control and BC Cancer, and it includes researchers from B.C. and Alberta. The group’s findings about Amazon have been released in a study published this month in the Journal of Medical Internet Research.
Caulfield and his co-authors point out that, according to media reports, Amazon may be enabling people to sell “dangerous and misleading cancer-related products,” despite policies prohibiting medical claims that aren't approved by regulatory agencies.
The study showed that nearly half of the book titles returned by the search term “cancer cure” on Amazon appeared to contain misleading information on cancer treatment and cures. The first search page had the highest percentage — almost 70 per cent — of misleading books.
Misinformation took various forms, from claiming cancer can be cured with a novel strategy or treatment to oversimplifying cancer to discrediting conventional cancer treatments. Many books falsely claimed their treatments were based in science, and a high number were favourably reviewed.
“We’re looking at all the drivers allowing this misinformation to get in front of people,” says Caulfield, including the algorithms that determine what rises to the top of a search list. Junk science around cancer is growing fast, he adds, and can do “incredible harm” — even cause death.
Caulfield’s team will examine how cancer therapies are marketed and reviewed on social media and other platforms.
They also looked at Google listings and reviews for 47 prominent alternative cancer clinics and found they were similarly misleading. In addition to rarely identifying themselves as alternative, the clinics’ ratings skewed high, on average 4.5 stars out of 5.
“The favourable Google listing and reviews of alternative clinics contribute to harmful online ecosystems,” the researchers conclude. Google reviews “provide compelling narratives but are an ineffective indicator of treatment outcomes and should not be used for medical decision-making.”
“Whether in the context of vaccines or cancer therapies, marketers of junk therapies want to create a degree of uncertainty to destabilize the public’s confidence in science, because it makes room for their brand or product — for their particular agenda,” Caulfield says. “Unfortunately, it works.”
Vaccine hesitancy arising from the COVID-19 pandemic has only accelerated the proliferation of misinformation by undermining science and sowing doubt, he says, calling the online information environment a “false balance machine” that misrepresents the scientific consensus on the one hand and elevates unproven fringe perspectives on the other, giving each equal consideration.
By arguing that they are being unfairly silenced, calls for “free expression” further elevate fringe views, says Caulfield.
“It’s a lie on two levels: first, those perspectives have never been silenced. And second, they’ve been explored and shown to be wrong.”
The lie is supported by a popular conspiracy theory positing that truly effective therapies — even cures — are suppressed by a medical and pharmacy complex that profits from cancer, says Caulfield.
A high degree of fear-mongering also serves as a harmful distraction, especially on social media, causing people to worry about certain red herrings — like microwaves, genetically modified organisms and secret toxins — rather than adopting proven cancer prevention strategies such as not smoking, drinking in moderation or not at all, and exercising.
“These are things we know are important,” says Caulfield.
Combating cancer misinformation is a challenging, ongoing battle, he adds, but it comes down to counterpunching methods he has been promoting for years, especially in his ScienceUpFirst campaign. His research team also hopes to develop an “innovative digital strategy” to improve public health literacy about cancer prevention and provide ways to counter misinformation online.
“But we also need to think of novel, maybe even regulatory, approaches to the problem, such as stronger truth-in-advertising regulations, especially with regard to search engines and social media,” says Caulfield.
