YouTube Takes an Important Step Against Cancer Misinformation

Like other social media platforms, YouTube has long been a potentially misleading source of cancer information. The company is now taking steps to combat that misinformation through a new policy.

The article's four key takeaways are:

1. The Prevalence of Misinformation: Cancer misinformation is widespread not only on YouTube but also on TikTok, Instagram, Facebook, Reddit, Twitter, and Pinterest. One study, for example, found “moderate to high levels of misinformation” in 21% of YouTube bladder cancer videos, which reached about 1.3 million viewers.
2. The Impact of Misinformation: Misinformation can have life-threatening effects on cancer patients. Some reject scientifically proven treatments because of misleading information online or from family and friends, then return with cancers that have become incurable.
3. YouTube's New Policy: Announced in August 2023, YouTube's new policy aims to remove content promoting harmful or ineffective cancer treatments or discouraging patients from obtaining professional medical care. Certain exceptions may, however, allow content to remain.
4. Verification and Reliable Sources: Health content creators should be verified, and oncologists should guide patients toward high-quality online information. YouTube currently verifies only channels with at least 100000 subscribers, for example, which may limit access to reliable information.

Details of YouTube's Policy

Announced in August 2023, the policy specifically focuses on removing content that promotes harmful or ineffective cancer treatments or discourages patients from seeking professional medical care.

Why This Focus Matters

This focus is particularly important because treatment misinformation can have life-threatening consequences for cancer patients.

We often encounter patients who prefer alternative treatments they read about online or hear about from relatives and friends over scientifically proven cancer treatments. Unfortunately, they often return weeks or months later with cancers that have become incurable.

The Scope of the Problem: YouTube and Beyond

Cancer misinformation is widespread online. It can take many forms, including outdated information, posts promoting unproven alternative cancer treatments, and biased content that fails to discuss risks.

In a 2019 study, Dr. Loeb and colleagues examined the first 150 YouTube videos about prostate cancer screening and treatment. Overall information quality was “moderate,” and lower-quality content attracted more engagement, viewers, and “likes.”

In another study in 2021, Dr. Loeb's team examined the quality of YouTube bladder cancer videos. They found “moderate to high levels of misinformation” in 21%, and those videos reached about 1.3 million viewers.

Dr. Loeb says: “This problem is not limited to YouTube. We studied prostate cancer information on TikTok and Instagram and found very high levels of misleading and low-quality information there too. This is a threat because increasing amounts of user-generated content are being published across platforms without any form of peer review or evaluation.”

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. They analyzed 200 cancer-related news articles or blogs published on these 4 platforms between 2018 and 2019.

About a third of the articles (32.5%) contained misinformation, and 30.5% contained harmful information. As in the YouTube research, engagement was higher for articles containing misinformation than for factual articles.

YouTube's New Policy: “Before It Is Too Late”

Online content is the main source of information for many patients. But the real challenge is how to oversee and fact-check what is available online.

Addressing misinformation is crucial but difficult because cancer information is highly dynamic, with new data constantly emerging. We see YouTube's first step as meaningful and are keen to see how the company will act.

YouTube's New Policy Is Part of a Long-Term Strategy

The new policy is part of a long-term strategy to simplify the platform's medical information guidelines into just three categories: prevention, treatment, and denial (or disputing the existence of particular health conditions).

The policy provides for removing content that contradicts guidance from local health authorities or the World Health Organization. Videos promoting cesium chloride as a cancer treatment, for example, will be removed.

YouTube may nevertheless allow certain violating content to remain if it provides additional context, serves the public interest, or describes personal patient experiences.

Regarding the new policy, YouTube wrote: “We may make exceptions for content that does not aim to promote misinformation violating our policies.”

YouTube also created a playlist of cancer videos from authoritative sources and partnered with Mayo Clinic to produce new cancer-related video content.

More Work Is Needed

Verifying health content creators could help patients find reliable information online. People should be able to access a creator's credentials easily and learn more about them.

YouTube currently places a verification badge beside a channel name to show that it is the official channel of a creator, artist, company, or public figure. Verification, however, is available only to channels with at least 100000 subscribers.

Oncologists can provide patients with a list of high-quality online information sources. The United States National Cancer Institute and American Cancer Society websites, for example, offer detailed patient-oriented information about cancer types and treatment.

Oncologists need to be where their patients are. But active participation on social media takes substantial time, and health systems need to recognize and support that effort.