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YouTube, like other social media platforms, has long been a source of misinformation about cancer, but the company is taking steps to combat this misinformation with a new policy.1-6
The policy, which was announced in August, has a specific focus on removing cancer-related content that promotes harmful or ineffective treatments or discourages patients from seeking professional medical care.6
This focus may be especially important because misinformation about treatment can have a life-threatening impact on cancer patients, according to Skyler B. Johnson, MD, of the University of Utah Huntsman Cancer Institute in Salt Lake City.
“We often will see patients come in who refuse or decline what would be considered evidence-based cancer treatments in favor of something that they’ve read about online or heard about from a family member or friend,” Dr Johnson said. “Sadly, we’ll often see these patients come back weeks or months down the line with cancers that have progressed to stages that are incurable.”
Scope of the Problem: Misinformation on YouTube and Beyond
Misinformation about cancer is highly prevalent online, according to Stacy Loeb, MD, of NYU Langone Health in New York, New York. It can take a variety of forms, including outdated information, posts touting alternative therapies that are unproven as cancer treatments, and biased content that doesn’t include a discussion of risks.
In a 2019 study, Dr Loeb and colleagues examined the first 150 videos about screening and treatment for prostate cancer appearing on YouTube.1 The researchers found that, overall, the quality of the information was “moderate,” and lower-quality content had greater viewer engagement, including more viewers per month and more “thumbs up” per view.
In a 2021 study, Dr Loeb and colleagues examined the quality of bladder cancer videos on YouTube.2 The team found a “moderate to high amount of misinformation” in 21% of the videos, which reached close to 1.3 million viewers.
“This problem is not limited to YouTube,” Dr Loeb said. “We’ve done studies looking at information about prostate cancer on TikTok and Instagram and found very high rates of misinformation and poor quality information on these other platforms.3,4 This is a threat, as there is more user-generated content posted on all kinds of platforms that doesn’t undergo any kind of peer review or vetting process.”
In a 2022 study, Dr Johnson and colleagues found high levels of misinformation about breast, prostate, colorectal, and lung cancer on Facebook, Reddit, Twitter, and Pinterest.5 The researchers analyzed 200 cancer-related news articles or blogs posted on the 4 social media platforms between January 2018 and December 2019.
About a third of those articles (32.5%) contained misinformation, and 30.5% contained harmful information. Similar to the research on YouTube, this study showed that engagement was higher for articles containing misinformation than for factual articles.
YouTube’s New Policy: “Better Late Than Never”
Combatting medical misinformation online is critical because that’s where many patients go to get their information, said Eleonora Teplinsky, MD, of Valley Health System in Paramus, New Jersey. The challenge is how to do it.
“Addressing misinformation is critical but is challenging, in part because cancer information is very fluid and new data is coming out at all times,” Dr Teplinsky said. “I do think this is really a good first step by YouTube, and I’m really interested to see how they’re going to take action.”
YouTube’s new policy is part of a long-term strategy that involves streamlining dozens of the platform’s medical information guidelines into just 3 categories: prevention, treatment, and denial (or disputing the existence of certain health conditions).6
The policy calls for removing content in these areas that contradict guidance from local health authorities or the World Health Organization. For example, videos that promote cesium chloride as a cancer treatment would be removed under the policy.
However, YouTube said it may allow certain content to remain in violation of the policies if it provides additional context on a topic, serves the public interest, or describes firsthand experiences.
“We may also make exceptions for content discussing the results of a specific medical study or showing an open public forum, like a protest or public hearing, provided the content does not aim to promote misinformation that violates our policies,” YouTube wrote in a help post on the new policy.7
At the same time, YouTube has created a playlist of cancer-related videos from authoritative sources and is partnering with Mayo Clinic to create new cancer-related video content.6
Dr Loeb said she was excited to see that YouTube is taking action to fight cancer misinformation, and she’s hopeful that the new policy will make a difference.
“Unfortunately, that is just one topic and one platform, but since YouTube is a very big platform that’s widely used in the United States and globally, this is definitely a start and very much in the right direction,” she said.
Dr Johnson said YouTube’s policy change is “better late than never,” but how it is enforced will determine if it is effective. The policy may not protect patients who are actively seeking misinformation, he said.
“The unknown here is whether patients are seeking that information and they’re going to find it regardless of whether YouTube is taking it down,” Dr Johnson said.
He explained that it’s possible for patients to get caught in “information silos,” where the YouTube algorithm continues to present them with misinformation. This misinformation modifies patients’ beliefs and affects their decision making. This can make it difficult to treat these patients effectively, potentially increasing their risk of death, Dr Johnson said.
More Work to Be Done
Dr Teplinsky said verification of health care content creators could go a long way to helping patients sort out which online information is credible. People should be able to easily access a content creator’s credentials and get more information about them, she said.
Currently, YouTube provides a verification check mark next to a channel’s name, which indicates that it is the official channel of a creator, artist, company, or public figure.8 However, verification is only available to channels that have at least 100,000 subscribers.
Oncologists can help steer their patients toward legitimate online sources of information by providing a list of high-quality online sources, Dr Loeb said. The National Cancer Institute and American Cancer Society websites, for example, both have detailed information on cancer types and treatment that is written for patients.
“There’s always going to be limited amounts of time in clinical encounters, and so it’s natural that our patients are going to want more information than we have time to discuss in a visit,” she said. “It’s very important that we proactively provide them with recommended resources that we have vetted and that are relevant to their clinical situation.”
Dr Loeb also recommends that physicians participate in public education about cancer. Dr Loeb is active on X (formerly Twitter) and also hosts the “Men’s Health Show” on Sirius XM satellite radio, but there are lots of ways that physicians can get evidence-based information out to the public, including podcasts and blogs, she said.
Dr Teplinsky agreed that oncologists need to meet patients where they are — online. However, being active on social media platforms takes a significant amount of time, and health systems need to acknowledge and support that effort, she said.
Disclosures: Dr Teplinsky, Dr Johnson, and Dr Loeb have no relevant financial relationships to disclose.
References
1. Loeb S, Sengupta S, Butaney M, et al. Dissemination of misinformative and biased information about prostate cancer on YouTube. Eur Urol. 2019;75(4):564-567. doi:10.1016/j.eururo.2018.10.056
2. Loeb S, Reines K, Abu-Salha Y, et al. Quality of bladder cancer information on YouTube. Eur Urol. 2021;79(1):56-59. doi:10.1016/j.eururo.2020.09.014
3. Xu AJ, Myrie A, Taylor JI, et al. Instagram and prostate cancer: Using validated instruments to assess the quality of information on social media. Prostate Cancer Prostatic Dis. 2022;25(4):791-793. doi:10.1038/s41391-021-00473-7
4. Nye J. YouTube, TikTok videos don’t provide quality information on prostate cancer screening. Cancer Therapy Advisor. Published November 11, 2022. Accessed September 21, 2023.
5. Goodman J. ‘Harmful’ articles on cancer treatment get more engagement on social media. Cancer Therapy Advisor. Published August 2, 2021. Accessed September 21, 2023.
6. Graham G, Halprin M. A long term vision for YouTube’s medical misinformation policies. Inside YouTube. Published August 15, 2023. Accessed September 21, 2023.
7. Medical misinformation policy. YouTube Help. Accessed September 21, 2023.
8. Verification badges on channels. YouTube Help. Accessed September 21, 2023.
This article originally appeared on Cancer Therapy Advisor
