Cancer misinformation: From 1957 FDA warnings to today’s digital Wild West

This week at the annual meeting of the American Society of Preventive Oncology , I had the opportunity to share insights on one of today’s most persistent challenges in healthcare -cancer misinformation.

It was a pleasure to meet the participants and to discuss with the chair of the panel, K Vish Viswanath and the other panelist, Roberta Braga.

Here are my thoughts on cancer, misinformation, and information ecosystems.

A Lesson from History: The 1957 FDA Warning

Back in 1957, the FDA took a bold stand against fraudulent cancer “cures” by posting the above warning posters in post offices. These posters specifically targeted products like Harry Hoxsey’s herb extract, which was promoted as a miracle cure despite having no scientific basis. They warned consumers that such treatments were unregulated, dangerous, and ineffective, emphasizing that the claims made by fraudulent marketers exploited the desperation of those facing a cancer diagnosis.

The logic was straightforward: post offices were common distribution points for these miracle cure products, so placing warnings there directly intercepted the consumers at the moment they were most vulnerable. Today, the same profiteering incentives and exploitation of patients’ fears remain, only now they are amplified by digital platforms and targeted online advertisements.

Cancer and model disease for studying impacts of health misinformation

Some researchers argue that cancer is an ideal model for studying health misinformation because its complexity and measurable outcomes create a “real-world laboratory” for examining the effects of false information on patient behavior and survival. Swire-Thompson and Johnson have recently argued that the high prevalence of cancer, its myriad treatment options, and the clear, often dire, consequences of delayed or inappropriate care offer unique opportunities to assess how misinformation influences treatment adherence and mortality. This disease context exposes the financial incentives driving deceptive practices and highlights how misinformation can distort trust in conventional medical advice, which is critical area for designing effective interventions that promote evidence-based care.

The evolving digital landscape of cancer misinformation

Today’s world of social media, online search, mobile apps, and internet platforms has transformed how patients access health information. Digital platforms make it easier than ever to order and access alternative treatments. However, they also amplify the low-quality and deceptive narratives by exploiting cognitive overload and vulnerabilities of cancer patients or those with confusing screening results.

• Digital advertising & profit motive: Alternative cancer clinics are spending millions (over $15 million from 2012 to 2023) on Google ads designed to mimic sensitive patient information queries, steering vulnerable individuals toward unproven treatments (Zenone et al., 2024).
• Influencers & shifting expertise: In our digital era, traditional medical expertise is being redefined. Patient and wellness influencers, celebrities (see discussions over claims by Elle Macpherson and Mel Gibson), along with “medical freedom” proponents now command significant attention, often blurring the lines between trusted health advice and profit-driven misinformation.
• Emotional Narratives: Viral stories promise quick, easy fixes, fueling hope in individuals overwhelmed by cancer diagnoses and treatment decisions. If you haven’t watched Apple Cider Vinegar on Netflix, I recommend it. It tells the story of Belle Gibson, an online influencer who faked her cancer diagnosis to promote alternative cures. Information can be easily distorted nowadays.

Understanding the patient’s journey and the information ecosystem that wraps around them

When we talk about misinformation, we often focus on the sensational viral posts – the “miracle cures” and scandalous tales like that of Belle Gibson. But focusing solely on these narratives risks ignoring the broader ecosystem of health information, which includes:

For one, not every piece of content reaches all patients equally. Patients are influenced by a mix of personal contacts, community voices, and digital media, which all play a role in how they interpret their health options.

The journey from receiving a cancer screening to making treatment decisions is complex. On the left side of this patient journey, individuals face a barrage of digital content—alternative clinic ads, misleading mobile apps, and unmoderated social media posts—that can overwhelm and confuse. On the right, even when patients finally access healthcare services, many hesitate to discuss what they’ve seen online for fear of judgment or dismissal.

Consider that these pervasive influences bombard individual patients across all levels of the socioecological model, including the individual, community, healthcare, social, and information ecosystem levels. I only had the time to discuss strategies at the interpersonal level; the key takeaway is that adopting this type of patient-centric approach to health information seeking and use broadens our perspective on improving both health communication and care delivery.

Example at interpersonal level: What clinicians can do

Right-hand side of the journey: Interpersonal communication and decision support

• Engage patients with open-ended questions about what they’ve been reading and where they are getting their health information. This approach creates a safe space where patients feel comfortable discussing online content.
• Consider asking how patients are researching cancer on their own, what digital spaces they are visiting, what mobile apps they might be using, and whether they want to find community online.
• For patients seeking community, they can be directed to reputable community support groups on social media platforms and in person, where they can connect with others experiencing similar challenges and questions.
• Encourage the use of validated decision-support tools to assist patients in evaluating treatment options. For instance, a recent systematic review emphasizes that interactive digital decision aids can help patients better understand risks and benefits, leading to more informed choices.
• Offer ways for patients to connect with you and care team between appointments.

Left-hand side of the journey: Digital spaces

• Ensure your organization’s website consistently features high-quality, evidence-based content that patients can trust as a reliable resource.
• Invest in social media training and practice effective digital communication to engage proactively with the public.
• Stay available as a trusted resource for journalists and fact-checkers, promptly answering questions and offering expert insights.
• Support initiatives by professional associations and organizational campaigns dedicated to addressing cancer misinformation and responding to public queries.
• Actively promote partnerships with patient support communities to help disseminate accurate information and foster trust in evidence-based care.