JMIR Publications

ABSTRACT

Background:

Recruitment into clinical trials is a challenging process, with as many as 40% of studies failing to meet their target sample sizes [1]. The principles of direct-to-consumer (DTC) advertising rely upon novel marketing strategies. The ability to reach expansive audiences in the online realm presents a unique opportunity for researchers to overcome various barriers to enrollment in clinical trials. Previous research has investigated the use of individual online platforms to aid in recruitment and accrual into trials, but a gap in the literature exists whereby multiple mass communications platforms have yet to be investigated across a range of clinical trials.

Objective:

There is a need for research to better understand how individual factors combine to collectively influence trial recruitment. The present study tested whether DTC recruitment of potentially eligible study participants via social media platforms (e.g., Facebook, Twitter) was an effective strategy, or if this process acted as an enhancement to already-existing, traditional (e.g., email via contact registries) recruitment strategies through established clinical research sites.

Methods:

This study tested multiple direct-to-consumer online recruitment efforts (Facebook, Twitter, email, and patient advocacy group/PAG involvement) across six national and international research studies from five rare disease consortia. Targeted social media messaging, social media management software, and individual study websites complete with pre-screening questions were utilized.

Results:

A total of 1,465 PRISM website referrals occurred across all six studies. Organic (not paid) Facebook posts (n=676) and RDCRN patient contact registry emails (n=461) represented the most successful forms of engagement. Despite the large number of leads generated from PRISM recruitment efforts, the number of patients that subsequently enrolled in an RDCRN studies was low. Across six studies, three participants ultimately enrolled, meaning that 97.8% of leads dropped off. Females were more responsive to recruitment tactics. Individuals identifying as not of Hispanic or Latino origin were most likely to click on recruitment materials. While there was variance in terms of ages that engaged with online recruitment, those in their 30s were most responsive.

Conclusions:

Results indicate that although accrual results were low, targeted messaging efforts remain a promising opportunity for engaging individuals in the research process. Key elements to consider include structuring the communicative process (workflow) in such a way that PAG involvement is central to the process, with clinical site coordinators actively involved after an individual consents to share their contact information. Given the high variability in the number of affected individuals across diseases, it is probable that individualized, fine-tuned approaches are needed for each population and research study. As evidenced by lead generation, results suggest that online recruitment efforts, coupled with strategically designed targeted messaging and PAG partnerships, have the potential to help supplement clinical trial accrual. Clinical Trial: ClinicalTrials.gov NCT02108860; NCT02939573; NCT03531996; NCT03118674; NCT02991807; NCT02523118