YouTube May Provide Misleading Information About Bladder Cancer

Many videos about bladder cancer on YouTube contain moderate to poor quality content, which can lead to millions obtaining wrong information about diagnosis and treatment, according to a study published in European Urology.

“A large quantity of content about bladder cancer is available on YouTube and it is used for peer-to-peer advice,” the study authors wrote. “Unfortunately, much of the content is of moderate to poor quality and presents a risk of exposure to misinformation.”

Bladder cancer is the second most-common urologic cancer in the world and the 10th most common cancer of all types, yet data are limited that highlight the validity of information on this specific type of cancer on social networks.

“The consequences of misleading information in the worst case can be deadly. They can cause people to delay or avoid scientifically valid treatments. During that time, the individual with bladder cancer may experience disease progression,” said Stephanie Chisolm, PhD and director of education and research at the Bladder Cancer Advocacy Network, in an interview with CURE®.

To assess this, researchers reviewed the first 150 videos on YouTube when searching “bladder cancer.” Two different criteria were used to evaluate and compare understandability and actionability of patient education materials, the quality of consumer health information and the presence of misinformation.

The videos reviewed in this study had a median of 2,228 views, which ranged from 14 views to 511,342 views. The quality of the information in 67% of the videos were moderate to poor.

Twenty-one percent of videos had a moderate to high amount of misinformation and reached 1,289,314 viewers. In addition, 44 videos had misinformation of any degree and had 1,483,859 views. Notably, videos with a doctor presenting the information were significantly less likely to have misinformation, although they had fewer views.

There was commercial bias — any presence of industry sponsorship or promotion of a product in a video or comment section — in 17% of the videos and reached 324,287 viewers.

Comment sections within the videos were sometimes used to seek medical advice (20%), offer support (19%) or give medical advice (9%). “Posts in a comments section often do not reflect accurate, scientific information. It is easy for someone to post that they 'cured themselves' of a disease by doing something- but that information is not documented in peer reviewed literature or checked by experts,” Chisolm said.

Researchers also analyzed the 20 most viewed videos (median views, 94,741). Of these videos, 78% were of moderate to poor quality and 28% had misinformation. These videos had more comments than the others which included social support (89%), seeking medical advice (67%) and giving medical advice (44%).

Chisolm offered help and said: “It is easy to create an official-looking website which can sometimes make it hard to tell if the information is correct. The National Library of Medicine has a simple tutorial on how to evaluate health information on the internet.”

“If the information provided by health care providers at diagnosis is not enough or the information is not sufficiently specific, this may lead to online searches for additional information,” the study authors wrote. “However, patient should be wary of YouTube and other social networks. Even well-intentioned misinformation may occur when a poorly informed patient advises others.”

The study authors recommend those looking for additional information on bladder cancer to verify the source and date, use organizations such as the Bladder Cancer Advocacy Network and Urology Care Network, whom both have YouTube channels with high-quality information and to talk to physicians not only about treat but also where to find additional information that is correct.

“Visit ww.BCAN.org to learn more about bladder cancer. We have a comprehensive website that is available 24/7 ... or look to large academic institution websites or the National Cancer Institute for legitimate and current information,” Chisolm added.

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