My patient, Ms. B, was in her thirties when she was diagnosed with early-stage breast cancer. (Her name has been changed in the interests of privacy.) Though this cancer had some aggressive features, managing it seemed achievable to me with timely surgery, chemotherapy and radiation.
But this treatment plan seemed particularly onerous and gratuitous to Ms. B from the onset. She regularly voiced suspicion about its efficacy and seemed incredulous whenever I counseled her on its details. This mistrust, I was disturbed to find out, stemmed from the internet. She was upset because none of the treatments offered were consistent with the “medical advice” she was receiving from Dr. Google and her social media newsfeed. For her, these sources had supplanted our evidence-based guidelines and mounds of clinical experience.
She was upset because none of the treatments offered were consistent with the “medical advice” she was receiving from her social media newsfeed.
At a moment when political misinformation and President Donald Trump’s attacks on the free press continue to receive considerable ink and coverage, it is medical misinformation which, as Duke cardiologist Haider Warraich wrote in The New York Times last year, “might have an even greater body count.” And with fake cancer news now metastasizing on the internet, both the management and prevention of an already unforgiving illness is becoming more treacherous.
These kinds of news articles would inevitably alter the course of Ms. B’s cancer. After surgery was completed, radiation and chemotherapy were scheduled to eradicate any remaining cancer cells both locally and systemically, respectively. But she opted against any further treatment, citing stories that lauded natural therapies-vitamins, juices and extracts as being superior alternatives. This was the path she had chosen, and we had to accept it, despite our obvious reservations.
Close to year passed before we saw Ms. B again. Imaging showed a potentially curable condition was now ravaging multiple vital organs simultaneously. She sadly passed away due to these complications.
A recent editorial in The Lancet Oncology rued the yawning trust deficit between the public and the mainstream medical community. “At the centre of this crisis, is a collision between personal autonomy, specious journalism, social media, widespread disinformation, and political marginalisation, which together undermine the value placed on science and academic endeavour,” the authors noted.
In oncology, this conflict surfaces in many ways. Most commonly, tension between doctors and patients occurs when the patient self-diagnoses and requests for specific treatments like immunotherapy, irrespective of their oncologist’s informed input. Even more concerning is the increasing tendency of patients to wade into the murky waters of alternative, unvetted therapies. These often hold sway over patients because of half-baked ideas about the toxicity and inefficacy of chemotherapy or because of a belief system that wrongly equates “all natural” with curative.
Two important studies in JAMA Oncology and in the Journal of the National Cancer Institute probed the relationship between the use of complementary and alternative medicine, alternative therapies’ compliance with conventional treatment (surgery, radiotherapy, chemotherapy and/or hormone therapy) and the overall survival in cancer patients. The studies concluded that patients who utilize alternative medicine are more likely to spurn conventional, clinically proven therapies. More concerning, those who choose alternative or complementary medicine are more than twice as likely to die than those who pursue traditional treatments.
Those who choose alternative or complementary medicine are more than twice as likely to die than those who pursue traditional treatments.
This is exacerbated by viral, clickbait news articles about cancer that are misleading and foment false perceptions. A recent story in the Jerusalem Post, for example, carried the headline “A Cure For Cancer? Israeli Scientists Think They Found One.” The piece profiled a small company called Accelerated Evolution Biotechnologies, whose board chair purports to offer “in a year’s time a complete cure for cancer.”
It was bold to publish such fantastical claims when the company is yet to conduct any human trials and has not published even a shred of data from its single study on mice. No impartial oncology experts were asked to comment on the lab’s speculative work. Nor was there mention that up to 97 percent of cancer drugs fail when tested in human beings.
These shortcomings did not prevent the shimmering headline from being amplified by Fox News, New York Post, Forbes, local TV news and far right figures such as Glenn Beck and Jacob Wohl. The veracity of the content mattered little on social media, where misinformation spreads faster than attempts to retract or correct it. As a 2015 study on the content of New York Times health news articles noted, this is especially true for health news that includes “positive sentiment” and is “emotionally evocative.”
In addition to articles, medical misconceptions are also widely circulated through email. Johns Hopkins had to address an email hoax after its name was being used to disseminate false information about cancer. Per the anonymous authors, cancer was attributed to nutritional deficiencies, noted to reside inside all bodies, said to spread through surgery and stated to be a disease of the mind, body and spirit.
Warraich, the Duke cardiologist, rightly acknowledges the temptation to Google cancer-related content. Aside from patients harboring varying degrees of skepticism about medical science and institutions, “the internet doesn’t require an appointment or a long wait, it is not rushed, it doesn’t judge, it doesn’t require a hefty co-pay and it often provides information that seems simple to understand.”
Further, a patient’s susceptibility to fake cancer news is not due to paranoia. As physician and executive director of Penn Medicine Center for Health Care Innovation David A. Asch notes, “It’s instructive to unpack why people believe what they do.” More often than not, there is a certain non-evidenced or faith-based belief system undergirding these thoughts, or it is borne out of a search for hope in the face of a grim prognosis. (And this is without getting into the various financial reasons that can motivate patients to seek lower-cost second opinions.)
The responsibility begins with the scientific community and oncologists, who most intimately understand the stakes here.
Given the troubling prospect of a post-truth era, Silicon Valley and the news media need to be vigilant. But the responsibility begins with the scientific community and oncologists, who most intimately understand the stakes here.
Scientists should ensure that the new data and conclusions they produce from trials are properly peer-reviewed and accurate in order to discredit cancer misinformation. They should maintain a strong presence on news and digital media to educate the lay public and patients on the implications of their work and on important concepts in research.
While oncologists can refer their patients to resources on how to evaluate online health information or address questions directly, they must, as Warraich emphasizes, “weave our science with stories” to regain trust. Their greatest asset will forever be an ability to humanize the cancer experience at the bedside in order to whittle away at the abstract science and its accompanying misconceptions.
Only then can progress be made in the ongoing cancer information war. At a time when cancer drugs are proliferating and the disease has become appreciably more manageable than ever before in history, we cannot lose.