Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Jun 3, 2021
Date Accepted: Dec 11, 2021
Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: An Observational Study
ABSTRACT
Background:
Many research studies fail to enroll enough research participants. Patient-facing electronic health record applications, known as patient portals, may be used to send research invitations to eligible patients.
Objective:
The first aim was to determine if receipt of a patient portal research recruitment invitation was associated with enrollment in a large ongoing study of newborns (Early Check). The second aim was to determine if there were differences in opening the patient portal research recruitment invitation and study enrollment by race and ethnicity, age, or rural/urban home address.
Methods:
We used a computable phenotype and queried the healthcare system’s clinical data warehouse to identify women whose newborn would likely be eligible. Research recruitment invitations were sent through the women’s patient portals. We conducted logistic regressions to test whether women enrolled their newborns after receipt of a patient portal invitation and whether there were differences by race and ethnicity, age, and rural/urban home address.
Results:
4,510 women who had not yet enrolled were sent research recruitment invitations through their patient portals between Nov 22, 2019 through March 5, 2020. 161 out of 4,510 of women (3.6% ) who received a patient portal invitation enrolled their newborn within 27 days. The odds of enrolling among women who opened the invitation was nearly 9 times the odds of enrolling among women who did not open their invitation (OR = 8.86, SE = 3.24, 95% CI [4.33, 18.13], P < .001). On average, it took 3.92 days for women to enroll their newborn in the study, with 64% (n=97 out of 161) enrolling their newborn within 1 day of opening the invitation. There were disparities by race and urbanicity in enrollment in the study after receipt of a patient portal research invitation but not by age. Black women were less likely to enroll their newborns than White women (OR = 0.29, SE = 0.09, 95% CI [0.16, 0.55], P < .001), and women in urban zip codes were more likely to enroll their newborns than women in rural zip codes (OR = 3.03, SE = 0.97, 95% CI [ 1.62, 5.67], P = .001). Black women (OR = 0.67, SE = 0.05, 95% CI [0.57, 0.78], P < .001) and Hispanic women (OR = 0.73, SE = 0.07, 95% CI [0.60, 0.89], P = .002) were less likely to open the research invitation compared to White women.
Conclusions:
Patient portals are an effective way to recruit participants for research studies, but there are substantial racial and ethnic disparities and disparities by urban/rural status in the use of patient portals, opening of a patient portal invitation and enrollment in the study. Clinical Trial: ClinicalTrials.gov NCT03655223
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