Participatory research and partnership building |
While buying ads on social media platforms has gained momentum
as a recruitment source for research, some populations do not
find ad-based recruitment acceptable or compelling (as evidenced
with study data; Figure 2). Rather, this
population (college students) values a trusted source. As such,
partnering with existing organizations (trusted by their user
base) was a highly efficient and acceptable method to solicit
participation. Creating successful collaborations involved
engaging organizations in study design decisions and offering
data feedback as a value add for collaborators. |
Human subject protections and participant safety |
Standard practice for implementing participant protections,
including use of informed consent and provision of clear
notification around safety monitoring can be adapted to an
entirely online environment. However, researchers must balance
asking survey questions where the responses would warrant a
clinical response (eg, acute suicidality) with the fact that
participants may not have a direct connection to care—and
consider their ethical responsibility to act on information
provided as part of a survey. For research that is not able to
provide access to a clinician in response to such safety
concerns, appropriately scoping the survey is warranted. |
Data security and privacy |
As with any research, careful attention to data security and
patient privacy is vital. Researchers should consider how data
collected virtually is stored and transmitted (this is
especially true if collecting sensitive data). Using secure
servers to host websites and data collection via the REDCap
platform, which has built-in functionality to store data
securely, were helpful. As email addresses (considered Protected
Health Information) were collected for follow-up and
remuneration, a process was implemented to store this
information separately from survey data (with potential for
linkage) to protect against inadvertent disclosure and generate
a deidentified dataset. |
Use of off-the-shelf tools |
Especially in instances of limited budgets or timelines (that
would prohibit working with a web developer to build/customize
needed software/platforms), existing tools are available and can
be adapted to the needs of this study. Use of these existing
tools was cost effective and allowed for quick
implementation. |
Virtual clinical trial |
A substantial hurdle to running a trial virtually was the need
to randomize participants in real time and in an automated
fashion (anticipating that many participants would enter the
survey outside of traditional working hours). Although REDCap
did not initially have the capacity to perform such automated
randomization, the research team worked with their developers to
create, implement, and test an algorithm to accomplish these
goals. Importantly, hosting the entirety of the trial in a
virtual environment likely facilitated participation and enabled
heterogeneity in the study sample (in terms of geographic
location and other participant characteristics) while carefully
designing access routes into the trial and controlling
participant experiences during participation helped to protect
internal validity. |
Recruitment from multiple platforms |
As differences are known to exist in the user base of different
social media platforms and across the networks of our partner
organizations, it was important to diversify recruitment efforts
to maximize sample yield and improve external validity.
Duplicating efforts across platforms and organizations also
likely had a multiplier effect whereby the cost to us was
minimal but resulted in participation gains. |
Use of online distributed cohorts and issues with
generalizability |
This and others’ data indicate that adolescents/young adults
prefer to be reached/engaged via online channels, the use of
which provides important access to diverse and traditionally
hard-to-reach groups. Nevertheless, there are limitations in
understanding the denominator (underlying population) in many
social media/online spaces and so generalizability remains a
concern. While this study was strengthened by assessment of
sample representativeness and implemented well-defined
recruitment paths, efforts are unlikely to yield a perfectly
representative sample of larger populations that exist off-line.
But just as there are potential biases from the fact that users
of our recruitment platforms may differ from nonusers (as well
as that responders may also differ from nonresponders), parallel
biases exist in other recruitment methods (eg, clinic attendees
and nonattendees); so care should always be taken to understand
whether factors that may contribute to populations filtering
into a sampling frame and then into a sample are likely to be
associated with key characteristics under investigation and to
select appropriate recruitment strategies accordingly. |
Protection against duplicative/false/ invalid records |
A major concern of Internet-based research is the potential for
false participation, especially when monetary compensation may
encourage duplicative entries. Careful application of
anticipatory or post hoc protections is recommended to minimize
invalid records. These considerations are essential and feasible
at the pre- and post-data collection stage; for instance, using
browser cookies or allowing one survey entry per IP address
(pre) or creating decision rules or implementing test questions
(eg, asking specific questions that only the population of
interest would have easy knowledge of and eliminating records
that provide incorrect or illogical answers) to identify records
that are unlikely to be valid (post). Further, instead of
offering compensation for each completed record (as done here),
remuneration in the form of a lottery or by donation to an
outside organization may be less likely to incentivize
duplicative/false records. |
Academic setting |
Rigorous research operating in an outside setting can be done
such that it aligns with the core values and practices of human
subject protections and IRB governance, an important advance
that protects the pathway of academic research undertaken in
partnership with private and outside organizations. |