Fellows Can Join the Fight Against Cancer Misinformation Online

Echo L. Warner, PhD, MPH

Many cancer organizations across the United States and internationally acknowledge a need for in-novative uses of social technology to improve cancer-related support and information provision. Patients and unpaid caregivers (ie, well-intentioned family members and friends) use social media and other on-line avenues for information and support during their journey with cancer.^1-4 The ongoing challenge of can-cer misinformation online underscores the necessity for oncologists to have a presence in online cancer networks as a trusted information resource.

People primarily turn to social media following a cancer diagnosis to establish and maintain close relationships, gain social support, and find anecdotal health information, particularly on topics they are uncomfortable discussing with their providers.^2-6 Patients and caregivers often consider topics such as finances, sexuality, nutrition, and integrative care to be inappropriate to discuss with their doctor. When patients with cancer and caregivers attempt to fulfill unmet information and support needs, they often turn to online spaces and places where they have established networks that they are comfortable lever-aging for these needs.

Even before the COVID-19 pandemic, younger patients and caregivers in particular preferred online connections to traditional services, such as in-person formal support groups, and this preference has only accelerated in pace and breadth during the past 2.5 years.^7,8 At the same time, cancer information on the internet is vastly unregulated by governing bodies and flourishes on user-generated sites such as social media and online forums.

Scientists in communications, marketing, nursing, public health, and medicine continue to study the reasons why some cancer misinformation pervades online communities and why other medical misinfor-mation is less impactful. Some promising theoretical models show there are several charac-teristics of health misinformation that influence the breadth and depth of the penetration it has in online spaces.9,10Specifically, misinformation consid-ered to be novel and shocking, claims to reveal hidden truths, personal anecdotes from others with experiential knowledge accompanied by images or visuals, and information individual users deem as likely to be shared by their followers has the highest likelihood of penetrating networks by going viral.^9,10

Figure

Virality is not only incentivized for online popularity, but it is also typi-cally driven by underlying and often hidden financial incentives of the content curator.¹⁰ Many patients with cancer find themselves in a delicate health and finan-cial situation, which makes them espe-cially vulnerable to online cancer misin-formation and financial exploitation.

Cancer misinformation is uniquely concerning because it has the potential to directly affect patient and caregiver decision-making, treatment and medica-tion adherence, financial hardship, and cancer health outcomes. For example, 30% to 40% of social media articles contain misinformation that can harm patients.¹¹ Patients with cancer have up to a 470% increased risk of death if they forgo evidence-based strategies in favor of unproven treatments, which are popular on user-generated social media sites.^11-14 Appropriately addressing misinformation, and improving treat-ment decision-making as a result, has the potential to increase survival by more than 5-fold among patients with certain cancers.^12,1

Fortunately, there are tried-and-tested ways individual users in online spaces can neutralize the effects of cancer misinformation (FIGURE).^15-17 A quick correction delivered by a trusted commu-nity member with an open-minded, accepting response that focuses on facts, as opposed to a response that rebuts or dismisses claims, can prevent bad infor-mation from spreading.¹⁶

Other recommended approaches to dispelling general online health misin-formation include partnering with influencers to disseminate high-quality information, carefully disseminating scientific research so it is not miscon-strued in the media, and fostering expec-tations of fact-checking through online public health campaigns.¹⁶

In clinical settings, oncologists can discuss with patients the importance of discovering the source of information, point out the strategies used by misinformation curators, and review financial incentives for misinformation campaigns online.^18,19

Increasing the value of online cancer networks requires concerted engagement from oncologists, who have historically been cautioned about engaging with online patient communities.¹⁶ Nonetheless, the changing dynamic of online health information seeking by patients and their caregivers demands recognition of a paradigm change in the way patients seek health information and the way physicians address it.

Given the high level of trust patients have in physi-cians, particularly in oncologists, this is a promising approach to addressing online cancer misinforma-tion.^16,20-22 There are several high-profile exemplar oncologists with large social media followings. Mark Lewis, MD, a hematologist/oncologist with Intermountain Healthcare in Murray, Utah, dispenses valuable information on Twitter (@marklewismd). Sanjay Juneja, MD, of Baton Rouge General Hospital in Louisiana, does the same on Instagram and TikTok (@TheOncDoc).

Developing a successful and professional online presence is possible by employing the following best practices:

• Be aware of boundaries, and do not offer medical advice on social media.
• Review your employer’s rules and regulations about social media use, and follow their guidance for disclaimers.
• Be conscious of patient privacy and caution to avoid inadvertent patient disclosure.
• Leverage referrals to other high-quality informa-tion. You do not have to know everything, but being aware of online resources, from federal, government, hospital, university, and community partners, will position you to disseminate high-quality cancer information in the face of misinformation.

Simply asking patients and their caregivers what they have learned online about diagnosis and treat-ment can open the door for opportunities to correct cancer misinformation in the clinic. However, oncolo-gists cannot feasibly answer all the questions patients and their caregivers have. Although many innovative patient and caregiver support and information services exist to address unmet information and support needs, patient and caregiver use of social media for cancer information has profoundly changed the way indi-viduals make decisions about their cancer care. There is an urgent need to recognize and ameliorate the threat cancer misinformation online poses to patients with cancer and their health outcomes.

References

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