Approximately 80% of the US population has a social media account. In 2019 it’s estimated that world-wide there will be around 2.77 billion social media users. Social media can be a powerful research tool for recruiting subjects and for conducting research. As regulatory professionals tasked with protecting research subjects, it’s important to understand the unique risks and benefits of social media use for research.
Luckily, at PRIM&R’s 2018 Advancing Ethical Research Conference (AER18), there was a session devoted solely to the complex issues related to research on social media. Three key issues were discussed at the session, including how IRBs can assess ethical issues related to subject recruitment via social media and ensure subject respect and privacy; use of social media platforms as a source of research data without eroding public trust in research; and how social media use by subjects can impact study integrity.
The same ethical principles and regulations apply to review of social media research as to research requests for a traditional “off-line” approach. However, with social media use, it’s important that researchers also familiarize themselves with the policies of the social media outlets they plan to use and consider people’s notion of privacy when using social media platforms.
Social media is an appealing recruitment tool since large groups of people can be reached quickly and many patient groups, especially those with rare conditions, congregate on social media to find support. However, though access to subjects may enhance recruitment, it’s critical that researchers are transparent about their intentions and do not create fabricated profiles. The notion of “privacy” varies across platforms with groups and users being able to choose various privacy settings for sharing information. Researchers need to be clear when requesting access to a group what their intentions are and to be sensitive to how they announce their presence in the space as a researcher (e.g. seek permission from group admin, request introduction, read group policies, etc.). This is important to prevent participants in the group from feeling betrayed and to avoid damaging the general public’s trust in research.
For research studies where the research will be conducted using social media data, the same considerations apply. Researchers are discouraged from “lurking” in groups considered to be “private” and from “friending” people to collect information on them without their explicit permission to do so. To aid in transparency, researchers should consider creating research profiles, instead of individual-style profiles. Even when researchers are collecting data marked as “public” they should be careful to paraphrase and avoid direct quotes in any publications as quoted material can often be searched for which can re-identify a subject.
Meanwhile, even studies where researchers do not intend to use social media can be affected by subjects’ use of these platforms. This is especially critical for drug trials where subjects may use social media to discuss studies (such as enrollment criteria and how to gain access to a study, adverse events, taste/look of placebo vs. active medication, and outcomes). Many times, investigators may be unaware of the issue until a subject brings it to their attention. When an investigator is alerted to such issues (e.g. a trial being discussed in a private social network setting) the investigator may need to take steps to preserve the integrity of a trial. The ADEPT framework (shown below), which was discussed during the session by presenter Emily Largent, JD, PhD, RN from the University of Pennsylvania, is a great example of a tool for mitigating issues related to participants use of social media and assessing risk.
In conclusion, social media provides great opportunities for researchers in recruiting subjects and learning about natural behavior through access to people and data. However, despite high use of social media and sharing of information, it’s important to remember and respect subject’s privacy, to understand the policies of the specific platform and groups the researchers will be accessing, and to be truthful and transparent about why the researcher is present on the platform. IRBs should use the same principles in reviewing social media research as traditional “off-line” approaches, plus take into account the nuances and privacy considerations for social media research as discussed above. Even researchers who did not plan on incorporating social media into their study should remember that their research may be affected by subjects’ use of social media.
For those interested in learning more, additional insight into social media use, best practice, and how social media and research overlap can be found in the following articles:
- Ethics of Social Media Research: Common Concerns and Practical Considerations
- Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review
Heather Cathrall, MBE, CIP, is the Assistant Director of the Children’s Hospital of Philadelphia Institutional Review Board. She has a Master’s degree in Bioethics from the University of Pennsylvania and Bachelor’s degrees in Cognitive Science and Psychology from the University of California, Berkeley. She has worked for the Children’s Hospital of Philadelphia IRB for over 13 years and was a research coordinator prior to her IRB work.
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PRIM&R’s next AER Conference takes place in conjunction with our Social, Behavioral, and Educational Research (SBER) Conference on November 17-20, 2019 in Boston, MA. Registration for these events opens in early June!