Врачи должны выдавать пациентам «информационные рецепты» для защиты от ложных данных в интернете

‘Information prescription’ can minimize possible negative impacts of online cancer content Key takeaways: - There is widespread inaccurate or guideline-discordant information about cancer online, particularly across social media platforms. - Clinicians can take a proactive approach to mitigate risks. Individuals with cancer are turning to the internet more than ever to learn about their diagnosis, prognosis and treatment. Consequently, the likelihood that they will encounter inaccurate, low-quality or otherwise harmful content has never been greater. “It is very important that we consider where our patients are going for information,” Stacy Loeb, MD, MSc, PhD (Hon), professor of urology and population health at New York University Langone Health, told attendees at this year’s COSMO Conference. “It is projected that online sources and AI will continue to play a bigger role, and that can have a wide range of impacts — both positive and negative.” ‘A dark side’ Nearly 60% of U.S. adults use the internet for health information, according to CDC data. Loeb — who has conducted extensive research to examine how social media content impacts health decision-making and quantify the extent of inaccurate or guideline-discordant information on these platforms — emphasized online content can offer multiple benefits. It can raise awareness, reduce stigma, educate and empower patients, and inspire individuals to make healthy lifestyle changes. In addition, crowdfunding campaigns have helped people raise money to pay for medical bills or other expenses. Online platforms also provide value to the clinical community, Loeb said. Peer-to-peer discussions can guide management of challenging cases, educational videos can showcase surgical techniques or technical procedures, and social media data can inform research into the concerns or unmet needs of patients and their family members. For example, Loeb highlighted how her research group examined online posts to better understand the unmet sexual health needs of patients with prostate cancer and their partners following diagnosis and treatment. The foundational work led to development of a validated questionnaire to address partners’ unmet needs. Still, Loeb’s work examining the accuracy and quality of online content has revealed what she referred to as “a dark side.” Loeb and colleagues published a review in 2024 in CA: A Cancer Journal for Clinicians that documented a substantial prevalence of inaccurate or guideline-discordant information about cancer on social media. Other research from her group that evaluated prostate cancer content across popular social media platforms showed inaccurate or guideline-discordant information in 42% of the top 150 videos on YouTube, as well as 41% of Instagram and TikTok posts. Inaccurate information about prostate cancer often focuses on topics related to sex, including myths that masturbation raises a man’s risk or that the malignancy is sexually transmitted. Inaccurate information about symptoms and testing also is shared frequently. “I am concerned — and sad — to report that if someone saw posts across many major platforms that were providing some sort of ‘facts,’ there is a pretty high chance they viewed something that contained inaccurate or guideline-discordant information,” Loeb said. “This work has helped raise awareness and identify gaps where more public education is needed.” Downstream effects When patients consume inaccurate or low-quality content, the downstream effects can be considerable. It can create discord or distrust with clinicians, Loeb said, and valuable time during clinic encounters that should focus on shared decision-making instead must be spent dispelling myths. A study by Shaverdian and colleagues showed men with prostate cancer treated by radiation therapy who used the internet as their primary information source — instead of their urologist, fellow patients or other sources — were 46 times more likely to express treatment regret and 83 times more likely to report having a worse-than-expected overall treatment experience. “These data highlight the potential dangers of reliance on internet-based resources and the importance of clinicians proactively counseling their patients,” Loeb said. In some cases, patients experience adverse health outcomes due to use of guideline-discordant therapies. Social media posts that promote alternative treatments frequently go viral. In one example, canine dewormers have been touted as a potential cure for cancer. A case report published in 2024 outlined how a patient with cancer who self-administered fenbendazole — used to treat parasites in dogs, cattle and horses — developed severe hepatotoxicity. One of Loeb’s colleagues described another case in which a clinical trial participant exhibited concerning results on liver function tests. Researchers eventually determined fenbendazole — not the therapy under evaluation in the trial — had been the cause. “For anyone conducting clinical trials, it is really important that we ask patients about anything they may be using,” Loeb said. “That toxicity could have been misattributed to the drug and led people to think it might be dangerous.” Concerns beyond accuracy Concerns about online cancer content extend beyond accuracy. Studies have revealed scarcity of content for non-English-preferring patients, as well as limited representation of diversity, Loeb said. Although Black men are disproportionately affected by prostate cancer, they are underrepresented in clinical trials. Loeb and colleagues identified the top 150 YouTube videos about prostate cancer clinical trials and asked a panel to share their perceptions about the race and ethnicity of the people featured. Panelists perceived only 4% of the 292 individuals in the videos as Black. A subsequent analysis — which followed similar methodology — examined the top 150 websites and the first 100 YouTube videos featuring general prostate cancer information. Of the 1,500 people featured in those videos, the consensus panel perceived 9% as Black and 1% as Latinx, Loeb said. “We don’t know what [race or ethnicity the] people really were but, in a sense, it almost doesn’t matter,” Loeb said. “What matters is how they were perceived by the person who is viewing this content but does not see themselves represented.” Loeb and colleagues conducted a randomized trial in which they created YouTube videos about prostate cancer. The videos featured the same script but four different speakers — a Black patient, a Black physician, a white patient or a white physician. Results showed Black adults expressed significantly more trust in the prostate cancer information provided in the video if the speaker was Black. “Representation really does matter for high-risk groups, and that is important to think about in our content,” Loeb said. Readability and understandability also can be problematic, Loeb said. “Unfortunately, a lot of posts on websites and popular social networks are not at the recommended reading level for lay health consumers, or they do not present the information in a way that is readily actionable,” Loeb said. When Loeb and colleagues assessed AI chatbot responses to common queries about cancer, they observed “generally good” quality of content with no guideline-discordant information, she said. However, investigators determined responses often were written at a college reading level and were “poorly actionable,” suggesting they are “not an ideal source of consumer health information,” Loeb said. ‘Information prescription’ Prior studies have highlighted the value of physicians and other members of the clinical team asking patients what sources — online or otherwise — they use for health-related content to minimize the possibility that they will encounter inaccurate or guideline-discordant information. Loeb suggested healthcare professionals take an even more proactive approach. “We should be giving them an information prescription,” Loeb said. “Our job shouldn’t only be to give prescriptions for drugs or doing surgery. We should anticipate that we cannot address all of the questions and concerns our patients and their families have during a short medical encounter. We should be thinking about the sources we have vetted and that we trust. Compiling and sharing a list of recommended resources that provide information that is appropriate to the specific clinical scenario and is written at the recommended reading level could be very helpful.” For more information: Stacy Loeb, MD, MSc, PhD (Hon), can be reached at [email protected].