Not everything you read or watch online is accurate – It’s a common sentiment uttered by parents, politicians and doctors alike.
But in the case of cancer information, false narratives can be harmful or even deadly. Researchers at NYU Grossman School of Medicine and NYU Langone’s Perlmutter Cancer Center found that a significant amount of bladder and prostate cancer content on YouTube is not up to snuff.
Dr. Stacy Loeb, a urologic oncologist and professor of urology at NYU Grossman School of Medicine, led a team of researchers to examine the quality of bladder and prostate cancer information on YouTube.
“This topic of misinformation has been in the news a lot lately,” Dr. Loeb told SurvivorNet. “However, relatively less attention has been paid to the quality of online information about cancer, so that was the gap that we were trying to fill with these studies.”
Dr. Loeb said she understands patients want to seek out detailed information online, but it’s best to work with your healthcare team to get recommended resources.
“It’s very reasonable that patients and their families may want more information than is possible to obtain in the clinical encounter,” Dr. Loeb said. “We all feel the time pressure, and getting the recommended resources from your healthcare team can be a great way to help navigate through this sea that is fraught with bias and potentially misinformative content.”
In the study, researchers reviewed the first 150 YouTube videos about bladder cancer and found that the overall quality of information was moderate to poor in 67 percent of the videos despite a median of 2,288 views. In 21 percent of the videos, they found a moderate to high amount of misinformation, and in 17 percent of videos there was apparent commercial bias.
Researchers also reviewed the first 150 videos on prostate cancer screening and treatment. They found 77 percent of the videos (115) with a total reach greater than six million viewers contained potential misinformation and/or biased content within the video or comments section.
In both studies, researchers found that more views did not mean better content. In the prostate cancer study, the more scientific the video, the fewer people engaged with it. Similarly, in the bladder cancer study, the more misinformation in the video, the higher number of views per month. Researchers said patients shouldn’t assume that the more “views” or “thumbs up” a video has, the more reliable the content is.
Dr. Loeb recommends patients and health care professionals take the following actions to avoid the spread of cancer misinformation:
Bladder cancer is the fourth most common cancer among men, and is especially seen in people over the age of 55. One of the leading causes of the disease is excessive smoking, with smokers being three times more likely to face a bladder cancer diagnosis than non-smokers.
Surgery is a common treatment option among many bladder cancer patients. In cases where the disease is likely to return, immunotherapy may be a viable post-procedure treatment. Using the power of your own immune system, this therapy targets cancer cells to eliminate them. Since 60 to 70 percent of people diagnosed with advanced bladder cancer may not be able to have the cancer fully removed from surgery, immunotherapy is a welcomed option for patients.
“What’s happened over the last decade is the development of these drugs called immune checkpoint inhibitors,” Dr. Arjun Balar, director of the genitourinary medical oncology program at NYU’s Perlmutter Cancer Center, told SurvivorNet in a previous interview. “Specifically, the checkpoint in question here is a checkpoint called PD-1, and we’re finding out that they’re particularly active in bladder cancer, and what these drugs do is reinvigorate the immune system and unleash the immune system against cancer.”
Prostate cancer is the most common cancer in men. Most prostate cancer is caught with screening examinations in the United States, but the cancer itself can look very different from one patient to another. Because there’s no one definite symptom for this disease, regular screening is vital for early detection.
“Prostate cancer is a very odd disease in that it doesn’t have a particular symptom. I could not tell a man, this is really the bad sign that you’ve got prostate cancer,” Dr. Edwin Posadas, a urologic oncologist at Cedars-Sinai, says in an earlier interview with SurvivorNet. “So when men think about things in their urinary tract, they often think about urinary frequency.
“My urination is different. I’m peeing too much. I’m peeing too little. I’m waking up at night to pee. Is this a bad thing? Possibly, cancer would be on the list of possibilities, but the good news is it’s not the only thing that’s on that list,” Dr. Posadas says. “So why is this important? One, if your body’s telling you something, you should listen.”