YouTube videos about prostate cancer may be dangerously misleading men to think they don’t need to get screened, or that injecting herbs into their prostates could cure cancer, a new study suggests.
In recent years, Americans have increasingly looked to Dr Google – instead of their actual physicians – for health information.
More than 60 percent of us spend time looking up medical issues online.
The internet has an endless treasure trove of (unverified) information that might be useful if you’re considering, say, trying a new diet.
But the stakes are much higher for cancer patients, a growing number of whom are choosing alternative treatments instead of proven ones like chemotherapy.
A new study from New York University found that 77 percent of the 150 most viewed YouTube videos on prostate cancer contained misleading or biased information that may encourage patients to get unnecessarily aggressive – and dangerous – surgeries.
There are well over half a million YouTube videos about prostate cancer on YouTube, but 77 percent of them may be misleading their millions of viewers, according to a new study
Every year in the US, nearly 165,000 new cases of prostate cancer are diagnosed.
Aside from skin cancer, prostate is the most common form of cancer in American men – but that doesn’t make a diagnosis any less scary to new patients or men concerned they may have the disease.
That is likely why there are so many prostate cancer videos with so many views on YouTube.
There are over 600,000 prostate cancer videos on the popular platform – more videos than there are people in the city of Milwaukee, Wisconsin.
Each of those has an average of 45,000 views, though some have as many as 1.3 million views.
But researchers at New York University found that many of those videos contain incorrect information, or don’t comply with US guidelines on how to talk to patients about cancers or define potentially confusing medical terms.
Perhaps most concerning, the higher the scientific quality of the research was, the lower the viewership – and vice versa, so the most inaccurate videos are the ones patients are most likely looking to for solace and education.
About one quarter of the videos verged on the promotional, demonstrating a bias toward new technology, and nearly 20 percent pushed complementary treatments (which can be helpful, but are not as well-proven as standard treatments) or alternative therapies, which can be downright dangerous.
For example, one video ‘was about injecting herbs into the prostate as a treatment for cancer and it had more than 300,000 views’ lead study author and NYU urologist Dr Stacy Loeb said.
‘That’s not recommended in the guidelines,’ she added.
The top YouTube result if one searches for ‘prostate cancer’ today (besides an ad video about HPV that shows a teenage girl in the thumbnail), was uploaded by UCLA Health, and features urologist Dr Mark Litwin and a former Major League Baseball player, Steve Garvey.
The video begins with Dr Litwin discouraging ‘willy-nilly’ prostate cancer screenings and a little more than halfway through Garvey tells his story, extols the virtues of Dr Litwin and UCLA’s procedures, and calls himself a ‘disciple’ of UCLA’s prostate awareness efforts.
The video does pass one of NYU’s key litmus tests.
This was likely because the videos were older than the most recent guidelines.
In 2012, the US Preventive Services Task Force released guidelines ‘recommending against cancer screening for all men,’ as a default.
Last year, that changed. The task force instead advised that doctors and patients weight the pros and cons of testing.
Dr Litwin says early on in the 45 minute video that patients and their doctors should discuss together when screening is or is not appropriate and a priority.
In doing so, Dr Litwin described ‘shared decision-making,’ or coordinated planning between doctor and patient, which is recommended by the current prostate cancer screening guidelines.
Only about half of the 150 top videos that the NYU researchers looked at described or encouraged this form of discussion.
‘Thankfully, prostate cancer is a very rapid and dynamic field,’ says Dr Loeb. ‘
‘That means we’re making more discoveries, there have been more drug approvals and the guidelines have changed over the years. That also means that information from even three years ago may no longer hold true.’
The UCLA video also highlighted a rather aggressive treatment plan (though it may well have been the best one for Garvey) and employs some very favorable discussion of Dr Litwin’s methods.
One commenter took note.
‘Not until the forty-first minute of this forty-seven minute video did either Garvey or Litwin address the issues of surgical side effects – even then, little information was provided – which leads me to wonder; was this video created as the public service they purport, or was it merely a somewhat informative infomercial for the UCLA Department of Urology?’ wrote Steve K (though there is some informative material early in the video).
This suggests that the video was guilty of at least some signs of bias toward surgery and UCLA itself.
And this is potentially problematic, as studies have found that for the 70 percent of new patients that are diagnosed with prostate cancer are in the early stages of the disease, when surgery is of little to no benefit for most.
The concern then is that distraught men who have just been diagnosed may be primed to say yes to more invasive, more expensive but no more effective treatments if they are watching YouTube videos that promote them.
‘Our study shows that people really need to be wary of many YouTube videos on prostate cancer,’ says study senior investigator and urologist Dr Stacy Loeb.
‘There is valuable information available in them, but people need to check the source to make sure it’s credible and to beware of how quickly videos become outdated as care guidelines constantly evolve with the science.’
Dr Loeb notes that many of the videos are older than new guidelines, and that physicians would do well to engage with platforms like YouTube and social media to encourage patients to go to perhaps less catchy, but more accurate sites for information, such as the Prostate Cancer Foundation (which helped fund the study) and the National Cancer Institute.
‘I think we have a responsibility, as clinicians, to participate in the public dialogue to ensure that there is high quality content out there,’ says Dr Loeb, ‘so we should be actively involved in social media content.’