Use of Social Media in Cancer Clinical Trials
Updated: Feb 20
Summary in 30 Seconds
One reason for poor enrollment rates Cancer Clinical Trials (CCT) is low awareness of clinical trials.
Social media is an affordable, accessible, and rapid means by which people with cancer can gain awareness and education about their illnesses.
To address legitimate concerns about using social media to recruit for CCTs, guidelines should be developed regarding what social media posts about clinical trials should, and should not, contain.
Online patient communities are an additional aspect of social media that can provide support for patients and caregivers, education, links to resources, and clinical trials.
Well-thought-out and ethical use of social media can raise awareness about and drive enrollment for CCTs.
The Awareness and Enrollment Problem
Cancer Clinical Trials (CCT) suffer from poor enrollment rates, resulting in slowed study completion times and even study cessation, which is one of the major reasons clinical trials are terminated early. Thus, it is important to consider innovative but ethical means by which CCT enrollment rates can be improved. One reason for poor enrollment is low awareness of clinical trials. According to a 2022 survey by the National Cancer Institute (NCI) Health Information National Trends Survey (HINTS), 41% of Americans reported knowing nothing about clinical trials. Furthermore, 22% of respondents said the first place they would go if they wanted to get information about clinical trials would be the internet. Therefore, one way to increase clinical trial awareness and enrollment is to utilize social media.
Worldwide and U.S. Social Media Use
Over 4.7 billion people worldwide (58.4% of the population) use social media with an annualized growth rate of 10.1%. In the United States, estimates of social media users range from 72%-90% of the population (238-300 million social media users).  This percentage represents a large majority of the population and indicates a massive increase in usage from a start of 5% in 2005. According to the Pew Research Center survey, the ten most commonly used social media sites in the U.S. are YouTube, Facebook, Instagram, Pinterest, LinkedIn, Snapchat, WhatsApp, Twitter, TikTok, and Reddit.
Examining social media and CCTs, a survey of NCI-funded principal and coprincipal investigators found that 86% believed social media can help raise CCT awareness. Furthermore, 82% of respondents agreed that social media can be used to provide education about CCTs, and 75% agreed that social media can help patients gain access to CCTs. Nevertheless, only 22% used social media for patient recruitment, despite abysmal CCT enrollment rates. Thus, Gunturu et al. ask, “Can clinicians afford not to engage in social media” to raise rates of clinical trial participation?
Concerns and Responses
Still, legitimate concerns exist about using social media to recruit for CCTs. In a qualitative survey of physicians in academic as well as community healthcare settings, four areas of concern were raised regarding social media use and clinical trials. First, physicians expressed a lack of time and expertise to manage social media outlets. Second, they voiced concern about the potential of social media to oversimplify trials or spread misinformation. A third theme highlighted the lack of clear regulatory and ethical guidelines for social media use in clinical trials as well as security/privacy issues when using social media. Finally, physicians raised concerns that social media’s demography might exclude populations with less frequent access to/use of such platforms from participating in clinical trials, including minority groups and/or older adults.
Gunturu et al. suggest the use of patient advocates as a means to help overcome the first two concerns (i.e., administrative burden and misinformation) expressed above. Such advocates could help identify appropriate CCT candidates, provide information packets about CCT ethical guidelines and issues as well as inform and guide such candidates to reliable websites to combat misinformation. These same authors suggest that the Office of Human Research Protections, which provides IRB guidance, should establish clear guidelines regarding what social media posts about clinical trials should, and should not, contain. The National Institutes of Health has provided information, “Guidance Regarding Social Media Tools,” containing a list of questions for researchers to consider when preparing their social media plan for submission to an IRB.
The Need for Improved CCT Enrollment
A systematic review of 37 studies found that improved recruitment to clinical studies was related to increasing potential participants’ awareness of the health problem being studied and its potential impact on their health, as well as engaging potential participants in the learning process. Social media is an affordable, accessible, and rapid means by which people with cancer can gain awareness and education about their illnesses. Given social media’s ongoing usage rise both in the U.S. and worldwide, it is an area ripe with the potential to educate both providers and patients about specific cancer issues (e.g., available trials, biomarkers, successes and failures with investigational treatments, etc.), highlight trial issues, address barriers to enrollment in CCTs, and engage a variety of groups involved in cancer clinical research.
The Well-informed Patient
Michael Thompson, M.D., Ph.D., describes a patient using social media as one who is “empowered, engaged, equipped, and enabled.” Weiss et al. suggest social media could be used to “. . . educate patients and providers about the significance of a new CT [clinical trial].” The HINTS study surveyed 2,648 CCT participants and found that those who used electronic means to look for health information were 1.7 times more likely to know about clinical trials. Participants who had heard of the website clinicaltrials.gov had 5.1 times greater odds of knowing about clinical trials. ASCO has provided several online resources about cancer and CCTs not only for patients but also for clinicians, patient advocates, and care providers.
Online patient communities are an additional aspect of social media that can provide support for patients and caregivers, education, links to resources, and clinical trials. An example of such a community is the ROS1ders for people with ROS1 fusions resulting in cancer whose stated goal is to: “…seek to improve outcomes for all ROS1+ cancers through community, education, and research.”
Raising Awareness and Driving Enrollment
“Social media is an obvious avenue to help educate and share information about clinical trials,” writes Michael A. Thompson, M.D., Ph.D. Well-thought-out and ethical use of social media can raise awareness about and drive enrollment for CCTs. To do so requires the collaboration of numerous participants--CCT volunteers, patient advocates, researchers and their organizations, and trial sponsors—on how to utilize and interact within the digital space. With such cooperation, effective use of social media can significantly increase CCT enrollment, leading to more efficient and effective CCTs, ultimately producing new, life-changing, and even life-saving treatments.
 Contemp Clin Trials Commun. 2018 Sep; 11:156–164  Clinical Trial Participation Among US Adults (cancer.gov)  Reports & Content — Kepios  Number of U.S. social network users 2022 | Statista  Demographics of Social Media Users and Adoption in the United States | Pew Research Center  ibid  J Clin Epidemiol 2016; 80:8-15  JCO Clin Cancer Inform. 2020; 58  JAMA Network Open. 2019; 2(9): e1911528  JCO Clin Cancer Inform. 2020 Mar; 4:254-258  Guidance Regarding Social Media Tools | National Institutes of Health (NIH)  PLoS Med 7(11): e1000368  ASCO Educational Book 2014; 34: e101-e105  J Clin Oncol. 2013;31 (suppl; abstr. 8592)  Contemporary Clinical Trials. 2022; 114:106676  Social Media Resources | ASCO  ASCO Educational Book. 2014; 34: e101-e105