JMIR Publications

ABSTRACT

Background:

Emerging digital health research poses additional roadblocks to the inclusion of historically marginalized populations in research. Alternative methods of accessing and engaging under-resourced communities may aid in achieving long-term sustainability of diversified participation in digital health research.

Objective:

The aim of this paper is: 1) to characterize the socioeconomic and demographic differences in individuals who enrolled and engaged with different remote, digital and traditional recruitment methods into a digital health pregnancy study; and 2) to determine if social media outreach is an efficient way of recruiting and retaining specific underrepresented populations (URPs) in digital health research.

Methods:

The Better Understanding the Metamorphosis of Pregnancy (BUMP) study was used as a case example. The BUMP study is a prospective observational cohort study utilizing digital health technology to increase understanding of pregnancy in a sample of 524 women, aged 18-40 in the U.S. The BUMP study employed different recruitment strategies including: a patient portal for genetic testing results, social media platforms (e.g. Facebook, Reddit, Instagram) via paid and unpaid ads, a community health organization providing care to pregnant women (Moses/Weitzman Health System), and other methods.

Results:

The use of recruitment methods such as social media as a tool to engage URPs into a digital health study was overall effective, with 594 completed study interest forms resulting in 140 enrolled participants (23.6%) over a 25-week period. Supplemental recruitment methods such as via community-based partnerships were less successful, as 53.3% (n=57/107) engaged with recruitment material, and 8.8% (n=5/57) of this group ultimately enrolled. Paid social media ads provided access to and enrollment of a diverse potential participant pool of race/ethnic-based URPs in comparison to other digital recruitment channels. Of those that engaged with study materials, paid social media recruitment had the highest % of non-White (Non-Hispanic) respondents (26.5%, n=85/321), in comparison to unpaid social media: Facebook and Reddit (22.2%, n=37/167). Of those that enrolled in the study, paid social media also had the highest % of non-White (Non-Hispanic) participants (20.0%, n=14/70), compared to unpaid social media (15.4%, n=8/52) and genetic testing service subscribers (18.8%, n=72/384). Recruitment completed via paid social media (Instagram) had the highest study retention rate (74.29%, n=52/70) across outreach methods. Study retention across social media (paid and unpaid) was similar. Recruitment via Moses/Weitzman Health System had the lowest % of study retention (40.0%, n=2/5). Retention of non-White (Non-Hispanic) participants was low across recruitment methods: Paid social media (15.4%, n=8/52), Unpaid social media (14.3%, n=3/35), and genetic testing service subscribers (17.8%, n=50/281).

Conclusions:

Paid and unpaid social media recruitment provide access to various URPs and allow for similar levels of sustained study retention in varying degrees, with different strengths and weaknesses for each methodology. URPs showed lower retention rates than their white counterparts across outreach methods. Community-based recruitment methods were associated with lower participant engagement, enrollment and retention compared to other recruitment methods used. These findings suggest unknown roadblocks to engagement of URP via more traditional methods, and suggests the need for more tailored research on converting engagement to enrollment and retention for URPs via social media methods to bridge this divide.