Social media and clinical trials: The pros and cons gain context when the patient is at the center

Abstract

Less than 10% of patients in the United States enroll in clinical trials, and even lower rates are noted among minority populations. Barriers to recruitment include lack of awareness, strictness of eligibility, and practical concerns, including travel distance and financial costs. The widespread use of social media offers the potential to use dynamic communication mechanisms to reach large, diverse populations-increasing awareness and ultimately accrual to clinical trialsand can be more user friendly than the existing (usually static) online resources. In addition, social media platforms can be used for the dissemination of clinical trial information to participants, ultimately including trial results. However, the use of social media in this setting is not without risks both to interested individuals and to the integrity of the clinical trial. Given the importance of this topic, the National Institutes of Health recently hosted a 2-day workshop entitled At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient, and Community Engagement. 1 When considering the pros and cons of communicating about clinical trials with social media, we should try to place patients at the center to understand the context. If there are issues with clinical trial design or execution, then we need to think about how we develop and operate clinical trials and not blame the patients, who are volunteer participants.

Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework

“…Conceptual and empirical research has encouraged the claim that social media can promote trust, transparency, and autonomy in research studies. For instance, the options for bilateral and multilateral interactions on social media enable participants to learn about the results of the clinical study in which they participate [ 20 , 21 ], which increases trust and transparency [ 22 , 23 ]. This allows for an individually adapted level of engagement between participants and researchers “in an era where the patients are collaborators and there is a continuum of need from paternalism to complete autonomy” [ 24 ].…”

Physician Perceptions of the Use of Social Media for Recruitment of Patients in Cancer Clinical Trials

“…Second, our work contributes to the current literature, which has acknowledged that using social media for recruitment has potential limitations related to issues of privacy, confidentiality, transparency of health information, the quality and reliability of posted information, and potential for coercion. 34,35 As suggested by our results, the solution may be dependent on resources from institutional and/or national organizations to guide and support recruitment efforts using social media. Such efforts are already underway, evidenced by work by the American Society of Clinical Oncology to develop a social media guidance document, a formal policy, and an online course as well as to assemble a working committee to encourage digital engagement in the cancer community.…”

The Oncology Nursing Society Rapid Review and Research Priorities for Cancer Care in the Context of COVID-19

“…These same social media platforms also provide nurse scientists with new methods for raising public awareness of clinical trials and enhancing study recruitment, intervention delivery, and retention, particularly for hard-to-reach communities (Burke-Garcia et al, 2017). Social media has also been used to educate clinicians in academic and community settings about opportunities for oncology clinical trials; however, issues such as unblinding participants have been raised (Thompson, 2014;Thompson & O'Regan, 2018). New resources, such as the National Cancer Institute (2020) workshop on social media and clinical trials and the Social Media ADEPT framework for online patient-investigator communication about clinical trials (Lynch et al, 2018), are helpful for researchers wanting more information on research using social media, such as consenting, data security, bias, and representation of different populations on various platforms (Pozzar et al, 2020).…”