Social media has emerged as a valuable tool for diverse stakeholders across the research community. Participants and patient advocacy groups frequently use online social tools to identify clinical trial opportunities and provide information and support for each other. Because of this, sponsors and sites have likewise turned to social media to drive their recruitment efforts. The reach of this medium is well-documented, with significant (and still increasing) usage across nearly all demographics according to a Pew survey. As a result, the use of social media in research will likely continue to expand.
With promise, however, comes challenge. In recent years social media platforms have been subjected to a wide array of criticisms, with confidentiality and data sharing emerging as the paramount concerns. This is most evident in the public’s perception of the events surrounding Facebook and Cambridge Analytica (see here for more information). Thus, it is imperative to ensure that research uses of social media conform to shared ethical norms. Since the US regulations and regulatory guidance do not explicitly address the use of social media in research and recruitment, uncertainty endures regarding its appropriate range of use. IRBs, sponsors, and investigators currently share responsibility for adopting ethical norms and best practices around social media use, which protect research participants and promote public trust in sponsors and the research enterprise.
Further analysis and clarification is needed for three areas of social media in particular: (1) the use of social media to identify and recruit individuals into research; (2) the role social media can play in maintaining engagement with enrolled participants and improving retention rates; and (3) the benefits and risks of social media as a communication tool for research participants and advocacy groups.
Social media is now a proven way to identify and recruit participants. Using this tool appropriately requires close attention and consideration to protect privacy and confidentiality. While online social recruitment strategies typically have similarities with more traditional recruitment methods (e.g., posting an ad on Facebook is in many ways like posting an ad on a billboard or bus), social platforms carry inherent privacy and confidentiality risks (Gelinas et al.). One concern is that many users do not know how to effectively manage privacy settings and fail to grasp the extent to which the information they share over the internet will be publicly available (Boyd; Madden et al.). Accidental disclosure of sensitive health information is a serious risk.
Social media recruitment strategies should therefore be sensitive to this dynamic. While the general risks of social media are voluntarily accepted by people who choose to use the platforms, researchers nonetheless have an obligation to minimize the risks and take steps to mitigate them. Researchers should not invite public online disclosures of sensitive information and should not interact with social media users in ways that would let that person’s friends and followers infer that they are a participant or candidate for participation in research. Researchers can do this by, for example, disabling or limiting public-facing posting capabilities on ad pages. Research staff may also make use of private direct messaging functions to interact with individuals who have shown an interest in research participation. A close understanding of the nuances of social platforms is crucial to participant safety and protection.
One of the most powerful aspects of social media is the ability to seamlessly connect people who may be regionally or continentally restricted. Harnessing this aspect allows clinical staff to foster a culture of inclusion, minimize participant isolation, and improve communication, especially with participants who are at risk of being lost to follow-up. These things can be achieved through online support/community information groups, discussion forums, or a designated study staff member tasked with building an ongoing digital rapport with participants.
Risks and Benefits of Online Participant Communication
While social media has the power to do good, it is important to consider the necessary safety precautions required with its use. Social media use generally thrives from user-generated content, and this aspect can sometimes present risks to participant understanding and scientific integrity. Clinical staff should—as a best practice—regularly monitor the tools that they use in their studies to prevent the following risks:
Undue Influence and Therapeutic Misconception
For example, based on multiple online participant reported outcomes, Participant A decides to stay in a clinical trial because other people they’ve met online say the investigational product has worked for them. Participant A may decide to withhold any reports of serious adverse events they are experiencing because they doesn’t want to be withdrawn from the study. As another example, consider that if Participant A comes to believe they are receiving a placebo, there is a risk they may withdraw from the study early on those grounds.
Example: Participant B reveals their symptoms and experience with taking an investigational product in an online discussion forum. Participant C also reveals their experiences in the form, which are different form Participant B’s. A study staff member responds online and accidentally breaks a study blind by identifying who was on treatment and who was on placebo.
By placing safeguards for the types of data shared, monitoring participant comment sections and communicating rules for engagement, clinical staff can minimize the risks associated with social media threatening study integrity.
Social media holds tremendous promise in the research sphere but requires sensitivity to pertinent regulatory and ethical considerations. Sponsors and investigators looking to incorporate social media into their research toolbox should devote themselves to understanding the details of particular platforms and work closely with their IRB to understand and apply the regulatory framework. Such collaboration is needed for the benefits of social media to be realized in ways that honor relevant norms and uphold public trust.
Need help assessing whether your social media recruitment campaign is in compliance or appropriate for your study population? Advarra can help. Contact us and discuss your study with our experts.