Dominic Chiarelli, JD

by Dominic Chiarelli

Using Facebook to Improve Recruitment and Retention in Clinical Trials

Poor Recruitment Equals Poor Outcomes for All

One of the most important aspects to a successful clinical trial is robust recruitment and retention.[1] A failure to efficiently reach enrollment goals increases costs, pushes out timelines, and potentially undermines the predictive conclusions of trials. This has a negative effect on sponsors, sites, and even participants. The problem of finding and connecting with participants is often compounded further by the necessity of tight enrollment criteria that limit the number of eligible participants even within the target therapeutic area. The pace of research would likely be greatly benefited by a freely available and widespread tool for finding and connecting with participants – Facebook appears ready to fulfill this role.[2]

The Power of Facebook and Social Media

Social media’s ability to reach and influence individuals seemingly surpasses any other type of traditional method of communication. It surprisingly cuts a very representative swath through the US demographic as there’s very little distinction in terms of social media use based on gender, education, or income. The only significant separator is age, with younger individuals using social media more.[3]

Facebook is the most popular social media platform with over 71% of adults who are online using Facebook on a regular basis. Facebook’s users are also the most active with 70% visiting Facebook daily and the most exclusive in that many use Facebook as their only social media outlet.[4]

Importantly, with regards to clinical research, the internet has also become a heavily used resource for medical information and is at least now on par with the traditional model of seeking medical advice through a face-to-face interaction with a healthcare provider.[5] In fact, social media, and Facebook in particular, is playing an ever increasing role in medicine as many users depend on their connections and the aggregating nature of social media to identify trustworthy information.[6] Due to this utility and prevalence, the research community has begun to publish sophisticated Facebook pages dedicated to clinical trials, conditions of interest, and sites of research. There is much to learn from these early adopters.

Pioneering Clinical Trial Facebook Pages

Facebook is increasingly being used to help build communities in which eligible participants may be alerted to new research opportunities or in which currently enrolled participants may be made to feel part of a cohesive community aligned in a common endeavor.

The Facebook pages (shown on the right) for the ADHD Nutrient Study, Metric Study in Triple Negative Breast Cancer, and Prospect: A Global Clinical Study for Metastatic Prostate Cancer [the original Prospect Facebook page was subsequently removed, so we’ve removed the hyperlink from this article] all serve to raise awareness and engagement around specific clinical trials. The timelines for these pages are routinely updated with stories of interest, publicly available reference information, progress reports about the trials themselves, and much more. Importantly, in each case, it appears that all information provided is narrowly tailored to the community of interest and does not include information that raises IRB scrutiny such as claims regarding effectiveness or safety, or appear to be misleading. The pages also all generally include a quick description of the clinical trial, information regarding the intended use of the page (not sharing health information), a link to a static clinical trial website, and identification of the page and trial sponsor.

Clinical trial sites like Discovery Clinical Trials have also adopted Facebook in order to raise community awareness about themselves and the different trials that may be enrolling at any one point-in-time. These pages tend not to include clinical trial specific information and instead act more as a general call for people interested in clinical research or who may have prior experience with the site. Even in the absence of specific clinical trial information, these pages would seem to have a significantly greater cost/benefit ratio than more traditional methods of raising awareness like posters, ads, or informational brochures.

Study Related Activities Require Prior IRB Review and Approval – Including Facebook

The use of Facebook to recruit and retain research participants for a specific research study is a research activity requiring prior IRB review and approval.[7] Like any social media campaign, careful consideration must be given prior to the launch of a Facebook page or Facebook Group. In the research context, early consultation with a qualified IRB is highly recommended. There are many potential legitimate concerns with the use of social media in research including protecting patient privacy, avoiding misleading or inappropriate statements, responding to user generated content, and identifying IRB reviewable subject matter.

Quorum Review has hands-on experience reviewing the use of social media in the research context and has learned much through our efforts to guide and council our clients in developing social media plans that are compliant with federal regulations and guidance. Download our latest whitepaper to better understand the considerations we feel are necessary in order to use social media in research.

[1] The Role of Social Media in Recruiting for Clinical Trials in Pregnancy, PLoS One 9(3): e92744, Steve M, Zhao XY, Koren G (2014).

[2] Facebook Pages for Research Sites: Engage and Recruit Clinical Research Participants

[3] Social Networking Fact Sheet – Pew Research Center

[4] Id

[5] Id., at 1.

[6] Id., at 1.

[7] 21 CFR 56.109(a)/45 CFR 46.109(a) & 21 CFR 56.111(7)/45 CFR 46.111(7)

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