Dissemination vs Misinformation: Social Media’s Role in the Evolution of Cancer Care

Laura Huppert, MD

Woven seamlessly between this week’s most popular meme and the latest viral cat video taking the internet by storm, oncology conversations have become a mainstay across various social media channels. Between physicians breaking down the latest data, patients seeking treatment advice, and cancer advocates raising awareness for various malignancies, oncology has carved out its niche in the digital world.

Despite the ability of these tools to connect doctors to colleagues and patients located down the road or halfway around the world, the advent of social media has also sparked a new age of misinformation. As doctors and patients scroll and connect, they must balance the novel method to access key data in the oncology field against the potential spread of misleading or incorrect information.

“Cancer treatment can be quite nuanced based on the individual patient characteristics and disease biology, so it is hard for a patient to get personalized advice, but having more info to bring to discuss with their oncologist is quite empowering,” Laura Huppert, MD, an oncologist at University of California, San Francisco (UCSF), UCSF Health, told OncLive^®. “There can also be misinformation online, so that is another potential downside.”

Since social media platforms entered the mainstream, platforms such as X (formerly Twitter), LinkedIn, and Facebook have become engrained as a communication tool for doctors, researchers, and patients. These platforms allow people from different walks of life to join a conversation through something as simple as a hashtag.

A study published in JAMA found the hashtag #MedEd was cited in 4,397,691 original posts on X between January 1, 2012, through 2022. Notably, this number of posts has continued to increase year by year, rising most recently from 692,095 in 2021 to 1,178,647 in 2022.¹

“Social media [gives] patients and providers a bidirectional dialog to learn from one another, to see if it improves outcomes, satisfaction, and understanding. I absolutely love it, and I love being a part of it,” said Eric Kumar Singhi, MD, a medical oncologist at the University of Texas MD Anderson Cancer Center in Houston.

Bridging the Communication Gap

Although virtual attendance options have increased opportunities for oncologists to participate in major medical conferences across the globe from the comfort of their office or home, the vast amount of data and information shared at these meetings can be daunting. Social media has provided another method to receive the top news, clinical trial results, and practice changes with a few quick clicks.

“Social media is a great way to discuss the latest data, particularly after academic meetings or the publication of key papers,” Huppert said. “It is helpful to engage in dialogue about the implications for clinical practice. It is also a great way to network with other physicians, patient advocates, and patients. I have met a number of colleagues and patient advocates on social media who I ended up working with later.”

During any major oncology conference, such as the ASH Annual Meeting, the ASCO Annual Meeting, and the ESMO Congress, hashtags coined specifically for each event allow virtual users to search for information and presentations for each meeting. For those attending these events in person, social media allows oncologists to remain connected and build relationships with colleagues.

“I’ve been inspired by and learned so much from relationships [made via social media], and I look forward to continuing to leverage social media to advocate and drive innovation in our cancer care to better support my patients,” said Vinayak Venkataraman, MD, a medical oncologist at Dana-Farber Cancer Institute and Harvard Medical School in Boston, Massachusetts.

In addition to some of the largest oncology conferences utilizing hashtags, organizations such as ASCO, ESMO, and ASH all have social media accounts to promote events and share news, providing direct access to information as it comes out from academic and medical meetings ensures that the data is available quickly, even for someone who did not attend a given conference.

Academic institutions and cancer centers have also hopped into the social media fray. In a study published in the Journal of Medical Internet Research in 2014, investigators found that even in the earlier days of social media, medical centers quickly adapted to the evolving times. Data showed that among all hospitals included in the study (n = 3371), 94.41% had a Facebook page and 50.82% had an X account.²

Beyond allowing oncologists to connect and share research, social media has also opened another channel for patients to access information. Ensuring patients receive accurate and relevant information via social media can be a challenge, Singhi noted, but he said connections made between patients and oncologists in the digital world can still have a positive impact on care.

“We need to adapt to how patients are learning,” Singhi explained. “They are thrown into this confusing space of oncology and quickly have to learn new terms to support themselves or to support their families. One of the ways that we can bridge the gap and better understand the patient voice is through social media.”

The Risks and Benefits of Social Media in Health Care

Unfettered access to information for oncologists and patients alike has highlighted one of the benefits of social media’s role in cancer care. Conversely, detecting relevant content in a vast sea of unfiltered posts can lead to misconceptions and the spread of misinformation, particularly among patients and advocates.

According to findings from a Japanese study published in JMIR Formative Research, among the top 100 cancer-related posts on X written in Japanese with the most likes between August and September of 2022, 44% contained misinformation, 31% contained harmful information, and 30% contained both.³

In this investigation, researchers aimed to discern how often misinformation and harmful information plague these online forums, specifically in Japan. In the top 100 cancer-related posts among the 69,875 Japanese posts identified, content with harmful information received a median of 95 likes (interquartile range [IQR], 43-1919) compared with a median of 75 likes (IQR 43-10,747) for posts with safe information (P = .04).

"Sometimes it [social media] may be dangerous [due to] misinformation. Our patients should be careful about the misinformation in social media, and I recommend they follow the [large, verified] community [accounts], especially experts in cancer treatment,” said Emre Yekeduz, MD, a research fellow at Dana-Farber Cancer Institute.

Even if patients are able to access reliable, accurate information, the evolution of precision medicine and individualized cancer care has made it more difficult for patients to correctly identify data relevant to their own disease, experts said.

Although social media has become a tool for patients, advocates, researchers, clinicians, and others to connect within the oncology space, it is vital to be aware of any risks associated with it, Vinayak Venkataraman, MD, explained.

“It is easy for mistrust and misinformation to brew on social media for both. I advise my patients to be cautious regarding the cancer-related content they read regarding cancer treatment and trials,” said Venkataraman, a medical oncologist at Dana-Farber Cancer Institute and Harvard Medical School.

Despite the potential for misinformation or information overload that can accompany the vast amount of data shared online, oncologists agree that social media represents a medium for communication and networking that should not be discouraged among those willing to use it in the oncology community and across health care.

“Social media has helped communicate evidence-based guidance on how people can understand their specific risk, how they can modify their risk through lifestyle and medication, and when they need to seek medical attention for screening or further evaluation,” Venkataraman added.

References

1. Ayers JW, Goodman AM, Smith DM. #MedEd: medical education and knowledge translation on social media. JAMA. 2023;330(10):909-910. doi:10.1001/jama.2023.12465
2. Griffis HM, Kilaru AS, Werner RM, et al. Use of social media across US hospitals: descriptive analysis of adoption and utilization. J Med Internet Res. 2014;16(11):e264. doi:10.2196/jmir.3758
3. Kureyama N, Terada M, Kusudo M, et al. Fact-checking cancer information on social media in Japan: retrospective study using Twitter. JMIR Form Res. 2023;7:e49452. doi:10.2196/49452