Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: Observational Study

Area of Science:

• Health Informatics
• Clinical Research
• Public Health

Background:

• Recruitment challenges hinder many research studies.
• Patient portals offer a potential solution for reaching eligible participants.
• Utilizing electronic health record patient portals can streamline research invitations.

Purpose of the Study:

• Assess patient portal invitations' association with newborn study enrollment (Early Check).
• Examine disparities in invitation engagement and enrollment by race, ethnicity, age, and location (urban/rural).

Main Methods:

• A computable phenotype identified eligible newborns from clinical data.
• Research invitations were disseminated via patient portals.
• Logistic regression analyzed enrollment post-invitation and demographic differences.

Main Results:

• 3.6% of 4510 women enrolled newborns after portal invitation.
• Opening an invitation increased enrollment odds nearly ninefold (OR 8.86).
• Enrollment disparities observed by race (Black vs. White) and urbanicity (urban vs. rural); no age-based differences.
• Black and Hispanic women were less likely to open invitations compared to White women.

Conclusions:

• Patient portals are effective for research participant recruitment.
• Significant racial, ethnic, and urbanicity disparities exist in patient portal use, invitation engagement, and study enrollment.
• Addressing these disparities is crucial for equitable research participation.