EXECUTIVE SUMMARY
Social media is an effective tool for recruiting youth participants for research studies, according to the authors of a recent study. Physicians express mixed attitudes about this practice, according to another study. Ethical considerations:
- Effectively recruiting youth means diverse participation;
- Personnel with social media expertise are needed;
- Researchers should not fake their identity or collect data without consent.
Researchers are turning to social media to recruit participants, with a recent study revealing that Instagram and Snapchat are effective ways to reach youth.1
“Given the near-universal use of social media by youth, using these platforms to reach them is quite effective, and can greatly facilitate their participation in research,” says Sheana Bull, PhD, MPH, one of the study’s authors and professor of community and behavioral health at Colorado School of Public Health.
Researchers used social media to recruit youth age 13 to 20 years in Colorado for a study to evaluate familiarity about age restrictions for recreational marijuana. “We wanted to share our experience in using social media to recruit for public health research,” Bull says.
Ads were placed in three social media platforms, encouraging the completion of a web-based survey. Over two months, 828 eligible youth completed the survey. “We were surprised at our success in reaching youth through Snapchat,” Bull reports. The researchers anticipated the variable success with Facebook and Instagram, since youth are not using these platforms consistently.
Considering the success of the social media approach, Bull sees ethical implications. “It is imperative to have diverse voices represented in health-related research,” she says.
Some researchers have a preconceived notion that youth will not talk to adults or engage in research. “When we work to include their perspective by reaching out to them where they are — online — we are better able to adhere to high-quality standards for participant engagement in research,” Bull offers.
Another group of researchers interviewed 44 physicians on their attitudes toward using social media for cancer therapeutic trials.2 “The motivation of the study was to understand how physicians understand social media use in the service of improved enrollment in clinical trials,” says William Dale, MD, PhD, one of the study’s authors and a clinical professor in the department of supportive care medicine at City of Hope in Duarte, CA.
Dale and colleagues wanted to know how physicians viewed the advantages of recruiting via social media, and also what concerns they expressed. Key findings:
- Physicians recognized the benefits of using social media for clinical trial recruitment;
- Physicians noted multiple barriers. These include more time and administrative burden, and the risk of misinformation.
“These barriers may lead to a lack of access for certain patients as we are increasingly dependent on social media for our information sources,” Dale suggests.
Physicians reported a need for institutional-level interventions, such as:
- restructuring of clinical trial offices to include personnel with social media expertise;
- increased evidence-based approaches to social media use;
- more physician training on the use of social media.
Community-based and academic-based physicians made similar observations and expressed similar reservations about social media use. This came as somewhat of a surprise, according to Dale: “We assumed the academic physicians would be more familiar with social media, more likely to endorse it and less likely to see barriers.”
Social media should not be assumed to be a “loose zone” in terms of research methods or participant welfare, says Katrina A. Bramstedt, PhD, secretary general at the Luxembourg Agency for Research Integrity. “Researchers must still adhere to the principles of research ethics and integrity,” Bramstedt cautions.
Many social media forums are used by vulnerable populations, such as children, students, and the terminally ill. Sensitive topics are discussed: mental health, sexuality, health status, and financial status. “Researchers should not assume that social media data, even when public, is permitted for their use,” Bramstedt adds. Researchers should follow these practices:
• Review each website’s terms and conditions to understand and honor the data restrictions. Social media platforms need to “sharpen their moral compass” regarding data security and transparency, Bramstedt says. For instance, terms and conditions need to be written in lay language.
“Also, they need to be presented in a manner such that users are encouraged to actually read them, rather than simply check the box to access the site,” Bramstedt adds.
• Access private web spaces only with the express consent of the owner. Be sure to secure their permission to perform institutional review board (IRB)-approved research, too.
• Take care to avoid disclosing the identity of social media participants. “Privacy is a complex topic due to the ease at which social media narratives can be searched and potentially traced to their author,” Bramstedt observes.3
“Researchers should not hide or fake their identity to lurk in private web spaces and collect data without consent. This is unethical,” she says.
There is guidance researchers can consult regarding ethical use of social media for clinical trial recruitment:
- The Association of Internet Researchers offers guidance on ethical research practices (Read more at: http://bit.ly/33pfsLs);
- The British Psychological Society has produced Ethics Guidelines for Internet-Mediated Research (Read more at: http://bit.ly/32nCZLq).
Some academic libraries also have produced general guides. Bramstedt suggests university librarians and ethicists co-teach seminars on social media research. Also, she says ethicists should provide research ethics trainings in hospital and academic settings. “Researchers may find this to be a research landscape that is unfamiliar to them, or they are not fully aware of the hazards,” Bramstedt adds.
Researchers who use social media for recruitment must follow the same rules and policies that are required with flyers, handouts, radio, or television, says Thomas J. George, Jr., MD, FACP, associate director for clinical research at University of Florida Health Cancer Center.
This includes the IRB preapproving any information given to potential subjects to ensure it is not misleading, inaccurate, or biased. “Most researchers who use social media to recruit subjects do so through general awareness-raising of the research, the need for the question being asked by the study to be answered, or where more information can be found,” George notes.
The safest way to use social media in this regard is to simply share preapproved information about the trial, without making any false claims about the research. “In other words, using social media as a digital venue for distributing the IRB-approved educational or promotional materials will prevent researchers from unintentionally overstepping ethical or regulatory boundaries,” George explains. Consider these other clearly unethical practices:
- Providing incorrect or false information to entice potential subjects to contact research staff, or offering enticements, payment, or favor for participation if the IRB did not approve those already;
- Falsifying social media endorsements from patient advocacy, foundation not-for-profit groups, or expert testimonials as a way to make the research appear more acceptable to the lay public;
- Overemphasizing the benefits while minimizing the risks of potential participation in the research.
On the other hand, asking “influential” social media users to share, like, or retweet the post is more of a gray area. “Some of this can be mitigated by referencing the account holder’s profile disclaimer that ‘retweets or likes do not constitute an endorsement,’” George says.
REFERENCES
- Ford KL, Albritton T, Dunn TA, et al. Youth study recruitment using paid advertising on Instagram, Snapchat, and Facebook: Cross-sectional survey study. JMIR Public Health Surveill 2019;5:e14080.
- Sedrak MS, Sun V, Liu J, et al. Physician perceptions of the use of social media for recruitment of patients in cancer clinical trials. JAMA Netw Open 2019;2:e1911528.
- Williams ML, Burnap P, Sloan L. Towards an ethical framework for publishing Twitter data in social research: Taking into account users’ views, online context and algorithmic estimation. Sociology 2017;51:1149-1168.
The results of two recent investigations reveal that young people and physicians offer differing views about using social media to recruit participants into clinical research trials.
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