The Use of Social Media in Research

Recruiting Research Participants Using Social Media

This document offers general guidelines for researchers planning to use social media to recruit human subjects into research. Human subject refers to a living individual about whom an investigator conducting research obtains data through intervention or interaction with the individual or identifiable private information (45 C.F.R. §46.102(f)).

These guidelines have been developed based on existing guidance and other advisory documents (e.g., Secretary’s Advisory Committee on Human Research Protections, or SACHRP; Considerations and Recommendations concerning Internet and Human Subjects Research Regulations; peer institution guidelines) and are intended to address foreseeable risks of using social media to recruit human subjects into research studies.

Researchers should refer to this information prior to submitting their study application.

These guidelines are not intended to address the use of social media as a venue for conducting research (e.g., collecting data about or observing online environments, incorporating social media into an intervention, data mining from social media sites); such activities are reviewed on a case-by-case basis by the IRB.

The review process for protocols that use social media as a venue for conducting research (e.g., collecting data about or observing online environments, incorporating social media into an intervention, data mining from social media sites) differs from recruitment activities. Such protocols are considered on a case-by-case basis and require ad hoc reviews as determined by the IRB.

Compliance with Social Media Terms of Use

It is the responsibility of the researcher, when designing a study, to understand the social media site terms of use, or TOU, relevant university policies, and applicable laws and to be aware of any research or recruitment-related restrictions on the social media sites through which they intend to conduct their recruitment activities. This includes a site’s advertising, privacy, and prohibited content policies. After IRB approval, research teams are responsible for amending their protocols as necessary in accordance with any changes to the site’s TOU that affect their recruitment plan, and for confirming their compliance with the site’s TOU at each continuing IRB review.

Participant Privacy, Confidentiality & Data Security

Private information is described as information about behavior that occurs in a context in which individuals can reasonably expect no observation or recording is taking place, and information provided by an individual for specific purposes that the individual can reasonably expect will not be made public (45 C.F.R. §46.102(f)). If individuals intentionally post or otherwise provide information on the Internet, such information should be considered public unless existing law and the privacy policies and/or terms of use of the entity/entities receiving or hosting the information indicate that the information should be considered ‘private.’

1. It is the responsibility of the research team, when designing a research protocol, to understand the various privacy and data security provisions of social media sites. Research teams must include this information in their social media management plans and provide this information to potential or enrolled participants as appropriate.

2. In social media or other Internet-based research settings, recruitment information can be forwarded or otherwise accessible to other individuals who may not be part of the intended participant pool. Research teams therefore must exercise caution to appropriately identify the targeted participant population and to ensure the equitable selection of participants.

 

Procedures and Considerations for Using Social Media to Recruit Participants

 

1. The IRB will review the content of social media recruitment materials according to existing IRB guidelines for traditional media recruitment such as flyers and news ads.

The McKendree University IRB must approve the recruitment materials prior to submission to social media sites for approval and prior to posting any such materials on social media.

2. Permissible types of social media recruiting and related considerations:

a. Static recruitment materials include any post or paid advertisement (e.g., Facebook right-column ads) that do not permit liking, commenting, sharing or other public interactions with potential participants on the social media site. Static recruitment materials that link to an IRB-approved destination do not require a plan for managing interactions on the social media site.

b. Interactive recruitment materials include any post or paid advertisement that permits liking, commenting, sharing or other public interactions with potential participants on the social media site. The plan for managing interactive recruitment materials must be clearly delineated in the social media management plan (see below).

c. Recruiting via public and private groups is permitted. Research teams must be aware of any site restrictions on recruiting participants via groups. If no site restrictions exist, teams should determine if the group has its own rules or requirements regarding research recruitment. If research recruitment appears acceptable, research teams must identify if there is a group moderator and request permission to communicate with and recruit group members. It is acceptable to take this step prior to requesting IRB approval. As part of the IRB approval process, research teams must submit to the IRB the text of the recruitment materials that will be shared with group members and their protocols should note any previously obtained approval from the group moderator, plans to obtain approval from the group moderator, or absence of a group moderator, as well as what the process will be for responding to messages from group members. These notes must include copies of correspondence showing dates and names and included in the social media management plan (see below).

d. Private messaging for recruitment, defined as two-way communication between a research team member and a potential research subject using private message features on social media sites (e.g., Facebook messages or messenger, Twitter direct messages), may be considered on a case-by-case basis, and may be subject to a more extensive review. A copy of the private message, privacy, and other considerations related to such communication must be addressed in the social media management plan submitted to the IRB (see below).

3. Social media recruitment activities must adhere to McKendree University social media guidelines when using both university social media sources (e.g. student email) and personal social media sources.

4. Screening prospective participants and tracking recruitment:

a. No screening of prospective participants can occur directly on social media. All screening and data collection must occur offline (e.g., phone) or via a secure platform (e.g., Qualtrics, Survey Monkey). If recruiting to a behavioral research study (e.g., survey) a waiver of consent should appear on the first page of the IRB-approved survey that the social media post links to.

b. If any identifiable data will be collected as part of the recruitment process, investigators must describe how they plan to collect, store, and use the data.

Social Media Management Plan

Investigators must submit a social media management plan as part of their study’s IRB application eForm. Plans must receive IRB approval prior to starting recruitment.

The social media management plan must include:

a. A list of all social media platforms and sites that will be used for recruiting. The list should include, as applicable, both official McKendree University email, Instagram, Facebook, and related accounts that will be used for posting recruitment materials or purchasing advertisements, and if needed, documentation of approval from the relevant account manager, as well as publicly available social media platforms such as personal Facebook, Twitter, Instagram accounts.

b. Public or private social media groups that will be used for recruitment, and a copy of previously obtained approval from group moderators, plans to obtain approval from group moderators, or absence of group moderators.

c. A statement acknowledging the research team’s review of and plans for adhering to the terms of use and advertising, privacy, and prohibited content policies of the social media sites to be used for recruitment. Include a list of dates, times, and links accessed.

d. Mock-ups of all planned recruitment materials. This includes static and interactive advertisements, posts, images, banners, tags, pre-determined responses to comments, messages to groups, and any other advertising elements. Include a clear explanation of the format and placement anticipated for each advertisement. To facilitate real-time campaign optimization, it is recommended that teams submit several variations of social media advertisements (e.g., alternate images or text) for IRB approval.

e. A description of the site where the link associated with the recruitment materials will lead (e.g., where social media users will be directed online when they click on an advertisement), and a screenshot of the landing page.

f. If applicable, targeting criteria to be used for paid advertising campaigns.

g. If applicable, the process for responding to group members’ messages.

h. If applicable, a description of how the research team plans to address privacy, data security, and identity verification considerations for private messaging with potential participants on a social media site.

i. If applicable, a description of any identifiable data to be collected through the social media site during the recruitment process, and how such data will be stored and used.

j. A description of which personnel will be charged with posting, monitoring and responding to recruitment-related communication on the social media site, as well as any procedures to monitor the activity of those personnel in accordance with the study protocol as well as McKendree University social media guidelines, including appropriate monitoring to ensure any posts or comments involving protected health information (PHI), or pertaining to study participation can be promptly addressed (e.g., study complaints, adverse events).

 

Adopted from the University of Florida IRB social media guidance document:

https://research.ufl.edu/wp-content/uploads/socialmedia.pdf.