Hashtag Cancer: Social Media and Oncology

Summary in Thirty Seconds

• Most Americans use social media, making it a crucial tool in the quickly evolving field of oncology, where new findings, biomarkers, and treatments are introduced each month.

• Social media is used by healthcare professionals (HCPs) to share research findings, distribute information, and improve communication between experts and patient advocates. HCPs can learn from patients through social media, gaining insights into their experiences, priorities, and concerns.

• Social media is also used by the general public for patient participation and psychosocial support, with patient advocacy organizations serving as platforms for advocacy and information about illnesses. However, information overload can be a problem for many people using social media and the internet to gather information about their illnesses.

• Clinical trial recruitment using social media holds promise as a cost-effective way of attracting patients in general and specifically underrepresented populations and promoting patient engagement with researchers.

• Social media can raise health literacy, strengthen patient-HCP collaborations, and disseminate information about clinical trials.

Social Media and Cancer

In 2005, approximately 5% of Americans used social media, with Myspace as the most popular site, LinkedIn in its infancy, and sites such as Facebook, Reddit, and YouTube newly launched. In contrast, in 2023, between 73% and 90% of the U.S. population (and an estimated 60% of the world’s population) uses social media on over 100 platforms.[1],[2],[3] Given this dramatic growth, social media’s uses fit well with the continually and rapidly evolving field of oncology. Supporting this idea is the fact that six new drugs have been FDA approved in the first half of 2023 and 12 in 2022.[4] Additionally, cancer was one of the most frequently searched health terms in a study of Google Trends across 5 countries over 11 years;[5] another study of Google searches revealed the top medical phrase searched was “cancer” with 7.29 million searches per month.[6]

The Medical Community

The medical community has used social media as a forum for information exchange both within itself and with the population at large.[7] This includes the sharing of new research developments, newly published articles, and opinions/discussions of such information.[8],[9] Journals with a social media presence have greater dissemination of results and more citations.[10] In the past few years, the “OncoAlert” network has been established to use a variety of internet/social media platforms to enhance communication between oncology professionals as well as with patient advocates.[11] A survey of over 1,000 people affiliated with the European Society of Medical Oncology (57% were medical oncologists), concluded, “Social media has a useful role in supporting cancer care and professional engagement in oncology…The majority [of surveyed oncologists] found social media useful to keep up to date and were satisfied with the role social media was playing.”[12] Morgan et al. state, “The incorporation of [social media] has the potential to help any oncologist regardless of geography, facilitating the opportunity to listen to some of the most influential leaders in the field and equalizing to offer the same advantages as those in richer countries.”[13]

HCPs can also learn from their patients through social media by gaining insights into their experiences, priorities, and concerns. The “Targeting Cancer” public awareness campaign in Australia and New Zealand relied heavily on social media to engage legislators and HCPs with concerned individuals to streamline treatment pathways for people with prostate cancer.[14] Importantly, HCPs must go where the patients are to use social media effectively. A 2023 ASCO presentation reviewed the failure of a Twitter hashtag campaign to inform people with cancer about clinical trials, cancer-related health issues, etc. Twitter has been an effective platform for intra-HCP communication. However, while the first Twitter post garnered a strong response, over the next 10 weeks, responses dwindled to just a few hundred. This led to an evaluation of the platforms patients most frequently use, which found that almost four times as many US adults used Facebook compared to Twitter.[15]

The General Public

A 2019 survey of people with cancer revealed that 77% reported the internet as their most important source of information (although 86% wanted to receive information from their HCP), 80% sought peers online for support and assistance, and 49% said their cancer diagnosis was a driver for joining social media.[16]

Researchers have categorized the benefits/uses of social media for patients:

1. Patient engagement and empowerment—using social media and text reminders for appointments, medication compliance, recording adverse events; providing a space to process; and reflecting on the cancer journey.

2. Psychosocial support—such support reduces illness-related distress, and larger social support networks are linked to a better cancer prognosis. Patient Advocacy Groups can provide social media forums for such support as well as advocacy and important illness-related information.

3. Information Exchange—72% of people search the internet for health information; social media can improve health literacy by presenting complicated information in user-friendly and understandable language, and some information is amenable to graphic/visual presentations. To identify reliable healthcare information, patients are advised to check the authorship and peer-review process of the article, dates of publication and reviews, citation sources, and cross-check/confirm information both with other online sources and with their own medical team.[17]

4. Enhanced Patient-HCP working alliance—sharing information increases trust. Information can also include tracking and sharing health status or activities (e.g., sharing the patient journey, communicating about adverse events or challenges, etc.)

5. Clinical trial education—social media can inform patients about the process and procedures of clinical trials as well as help them find new or ongoing cancer clinical trials.[18],[19]

Misinformation

A major issue with information gleaned from social media is the wildly inconsistent reliability of the presented data. Information can be presented anonymously, with made-up or dubious credentials, and/or have opinions presented as fact. Cancer misinformation is the most common topic for such deception or opinion-as-truth. Two cancer experts reviewed the 200 most popular social media articles on the 4 most common types of cancer (breast, prostate, colorectal, and lung) and found one-third contained misinformation and 30% included harmful information.[20] Unsurprisingly, 94% of Americans stated they trust HCPs as a health information source, while 64% trust information found on the internet.[21]

Interestingly, research suggests that people who believe one piece of misinformation tend to believe more of the same. A study of over 900 Facebook participants evaluated the accuracy of true and false social media posts on statin medications, cancer treatment, and the HPV vaccine. People who believed in misinformation about the HPV vaccine were also more likely to believe in misinformation about statins and cancer treatment. Individuals with less education and health literacy, less trust in the healthcare system, and more positive attitudes toward alternative medicine were more likely to believe in health misinformation.[22]

Information Overload

An important challenge for many people with cancer in the digital age is trying to make sense of the huge amounts of medical information online. Patients seek information from their healthcare team, social networks, websites, blogs, etc. Importantly, too much information—“information overload”—is associated with anxiety about being unable to comprehend the amount of material and use it effectively to make decisions. Approximately 75% of people with cancer experience information overload.[23] This suggests it is important for HCPs to provide information to their patients in an understandable as well as manageable fashion.

Clinical Trial Recruitment

Clinical trial recruitment using social media holds promise as a cost-effective way of attracting patients in general (and specifically for underrepresented populations) and promoting patient engagement with researchers. However, using social media for recruiting also poses important ethical issues. Recent publications have raised concerns about whether social media can be used for recruitment purposes while preserving the fundamental cornerstones of research ethics and biomedical ethics, as reflected, for example, in the US Health Insurance Portability and Accountability Act and the General Data Protection Regulation of the European Union.[24] Examples of ethical challenges in using social media for clinical trial recruitment include balancing the provision of information/raising awareness with persuading/”nudging” someone into a trial; informed consent issues; privacy and data security issues; digital literacy favoring more sophisticated and/or literate users over those who are less so, leading to inequitable recruitment.[25]

Clinical trials suffer from poor diversity both ethnically and regionally.[26],[27] One reason for clinical study inequity is the difficulty in reaching certain groups. These hard-to-reach populations are often from socially disadvantaged groups, including those from lower socioeconomic status, ethnic minority groups, or older adults. Social media may help address poor trial representation by increasing the ability of researchers to recruit hard-to-reach target populations.[28]

Beyond improving clinical trial diversity, social media for recruitment may also be less expensive and more efficient. A review of 23 studies using online clinical trial recruitment found that the median cost per enrollee for web-based recruitment was $72 while the median cost per enrollee using offline recruitment strategies was $199. This study also found that more than half of the studies reported a better online recruitment rate than offline efforts.[29]

The Bottom Line

Social media can enhance communication within the oncology community, potentially benefiting people with cancer by providing a means for engagement and empowerment, increasing psychosocial and informational support, strengthening patient-physician relationships, and relaying opportunities for clinical and research study participation. However, social media can also spread misinformation, overwhelm people with information overload, and raise some challenging ethical issues. Social media is central to most Americans and will likely continue to grow in this regard. Morgan et al. state that social media can …"bring many voices together and strengthen the oncology community to engage, enlighten, encourage.”[30]

[1] dataReportal.com [2] www.statista.com/statistics/278409/number-of-social-network-users-in-the-united-states/ [3] www.smartinsights.com/social-media-marketing/social-media-strategy/ [4] www.fda.gov/drugs [5] JMIR Cancer. 2016; 2(1):e5 [6] seattleorganicseo.com/top-health-related-search-keywords [7] J Clin Med. 2018; 7(6):121 [8] Cancer Discovery. 2022; 12(7):1620-1624 [9] Endocrinol Diabetes Nutr. 2020; 67:295-296 [10] ASLIB J Inf. Manag. 2017; 69(6):674-687 [11] www.oncoalert360.com/ [12] ESMO Open. 2021; 6:100104 [13] Cancer Discovery. 2022; 12(7):1620-1624 [14] www.targetingcancer.com.au [15] JCO Oncol. Practice. 2023; 19(2):63-65 [16] J Cancer Res Clin Oncol. 2019; 145(7):1865-1875 [17] Clin. Oncol. 2023; 35(3):143-146 [18] J of Oncol. Pract. 2018; 14(12): 731-736 [19] J Med Internet Res. 2021; 23(5):e17917 [20] J Natl Cancer Inst. 2002; 114(7):1036-1039 [21] HINTS Briefs; 2019; No. 39 [22] Health Psych. 2021; 40(4):274-284 [23] Patient Educ. Couns. 2014; 94:90-96 [24] Am J Bioeth. 2017; 17(3):3-14 [25] J Med Internet Res 2022;24(5):e31231 [26] JAMA Oncol. 2019; 5(10):e191870 [27] JMIR Cancer. 2022; 8(2)e33240 [28] PLOS Biol. 2017;15(3):e2002040 [29] J Med Internet Res. 2020 22(11):e22179 [30] Cancer Discovery. 2022; 12(7):1620-1624