A decline in public trust in physicians and the rise of misinformation and “fake news” spread via the Internet has led to an increase in the use of unproven, unconventional treatments by cancer patients, claims an editorial that says efforts to communicate genuine medical advances need to be redoubled.
The editorial, published in the September issue of the Lancet Oncology, says that the “collision” between greater patient autonomy, falling trust, and the rise in social media has led to an increase in self-diagnosis and the use of alternative therapies by cancer patients.
This, it warns, may result in patients refusing conventional, proven therapies and increase their risk for death compared with patients who follow recommended treatment regimens, as previously reported by Medscape Medical News.
The editorial urges all those working in the oncology world to tackle the “disinformation and…lies” that are spread across social media, news platforms, and marketing channels by focusing on the communication of accurate information.
It points to a National Institutes of Health website that aims to help users evaluate health information on the Internet, as well as the recent hiring of a digital nurse by UK charity Macmillan Cancer Support to debunk fake news via a question-and-answer service.
There is nothing new in having to deal with fake news and misinformation in oncology, says Martin Ledwick, head information nurse at the leading charity Cancer Research UK. “This is something that has been around for a long time, and as a charity, our position is to challenge where there isn’t a decent evidence base for a treatment that’s being promoted,” he told Medscape Medical News.
Ledwick explained that Cancer Research UK set up its online forum around 10 years ago partly because “we could see when we looked around at the time that there wasn’t really a properly moderated forum out there for cancer patients.
“You could see that people were having suggestions made to them about alternative therapies and things like that, and no one was really picking that up,” he commented.
Ledwick noted that Cancer Research UK’s science blog also “spends a lot of time debunking myths and reinforcing the value of proper evidence base before people make decisions.”
Their team of nurses staffing their helpline “respond to a lot of inquiries from people who have heard about something perhaps through the Internet and want to explore it but haven’t understood that it’s not as good as it looks,” he said.
Ledwick believes that the growth of the Internet in recent years has created “much more of a platform for ideas to spread” and that that has led to a shift in the nature of the inquiries they receive.
He said that complementary treatments are “usually pretty harmless.” As long as the people offering them “are not overclaiming about them,” there is no problem with people taking them, he said.
“What gets tricky is when you’ve got someone saying this will definitely work and getting people signing up to it for that reason,” he warns.
Another problem, Ledwick noted, is when patients think they can use alternative treatments instead of conventional therapies.
“That, I think, is a worry,” he said, “that sometimes people think, well, maybe I will put off having conventional treatment and see if this works first, because, to be honest, it won’t.
“If it’s not a scientifically based, properly researched therapy, you’re basing your choices in hearsay and anecdotes rather than proper evidence,” he warns.
Decline in Trust in Health Professionals
The editorial notes that a “major challenge” in oncology today is a decline in trust by the lay public in professional opinion, at the center of which is “a collision between personal autonomy, specious journalism, social media, widespread disinformation, and political marginalisation.”
The editorial states that together, these factors undermine the standing of science and academic endeavor, which, in oncology, has led to self-diagnosis and patients’ “demand for specific treatments irrespective of their doctors’ advice.”
Patients are also turning to “alternative unproven therapies,” and clinicians are practicing what has been termed “defensive medicine” to avoid lawsuits, primarily through the overuse of diagnostic tests.
The editorial points to two studies, one published earlier this year and one in 2017, that show that cancer patients who use complementary medicine are more likely to refuse surgery, radiotherapy, and chemotherapy and are more than twice as likely to die than those who receive conventional medicine.
“How has society got to this point, where unproven interventions are being chosen in preference to evidence-based, effective treatments?” the editorial asks.
“Unfortunately, disinformation and — frankly — lies are propagated widely and with the same magnitude as verified evidence due to the ease with which social media, ubiquitous online news platforms, and disreputable marketing exercises can populate information channels, which often do not have sufficient funding to employ subject-specific journalists to weed out facts from fiction,” it comments.
The editorial asserts that to tackle this problem and to stem the decline in public trust, greater efforts need to be made to communicate medical advances accurately to both patients and the lay public “to ensure genuine knowledge can be separated from false material.”
It adds that oncologists need to be better protected from “spurious legal proceedings, bureaucracy, and unnecessary stresses.
“If these challenges are not addressed soon, the great advances in science and medicine that have markedly improved human health worldwide could be easily undone and society will come to regret such inaction and reliance on unreliable sources of information,” it concludes.