Patient Engagement and Consumerism - Translational Informatics: Realizing the Promise of Knowledge-Driven Healthcare - page 147

consumers being engaged in the project, others just require their consent, and some
just require their data.
In this chapter, we focus on the more patient-connected parts of translational
informatics and clarify connections to patients that exist. Previous chapters have
looked at a specifi c scientifi c paradigm. Here, we will instead focus directly on the
patient. We begin by describing from the patient perspective the various ways one
can be involved in research and affected by translational informatics. We then focus
on areas from that perspective dependent or affected on patient engagement, and
describe methods that may be used to make the engagement, and therefore the
research, more successful. Throughout, we give examples of projects that have
improved research and translational informatics by improving patient engagement.

9.2 Patient Participation in Research

Patients participate in the research process in various ways. Among the most obvi-
ous is by participating as subjects in research studies. In a prospective study, indi-
viduals are followed over a period of time, with data being collected throughout the
study for measurements used in statistical tests.

9.2.1 Recruitment

Participation in a prospective trial begins with recruitment where potential subjects
are contacted and requested to participate in a trial. Recruitment happens in multiple
ways. With some studies, patients may hear about a study through advertisements
and then contact the study team. In other studies, patients are contacted directly by
a clinician providing care or someone representing the care provider. These repre-
sent the most common forms of recruitment.
Ideally, studies with generic inclusion criteria understood by patients or needing
to study a broad population would use advertising as a recruitment strategy, while
studies with more complicated criteria or with rare conditions that are better under-
stood by clinicians would have providers recruit patients directly. In reality, neither
works well. Two challenges to recruitment are complicated or restrictive entry cri-
teria, and clinician participation in recruitment [ 1 ]. Unfortunately, these two issues
work together - restrictive entry criteria often need clinical judgment or information
to identify potential subjects, but identifying this information by clinicians takes
time, which is already a scarce resource. The result is that most clinical trials experi-
ence recruitment problems [ 1 , 2 ], including delays, increased costs, or failures of
the study [ 3 , 4 ].
Recently, some initiatives have improved recruitment success by leveraging
patient engagement in the recruitment process. Rather than patients being contacted
by researchers through advertising or clinicians, patients can proactively indicate