Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: 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 health care system's clinical data warehouse to identify women whose newborns 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: Research recruitment invitations were sent to 4510 women not yet enrolled through their patient portals between November 22, 2019, through March 5, 2020. Among women who received a patient portal invitation, 3.6% (161/4510) enrolled their newborns 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 (SE 3.24, OR 8.86, 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% (97/161) 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 (SE 0.09, OR 0.29, 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 (SE 0.97, OR 3.03, 95% CI 1.62-5.67; P=.001). Black women (SE 0.05, OR 0.67, 95% CI 0.57-0.78; P<.001) and Hispanic women (SE 0.07, OR 0.73, 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, the opening of a patient portal invitation, and enrollment in the study.

Trial registration: ClinicalTrials.gov NCT03655223; https://ichgcp.net/clinical-trials-registry/NCT03655223.

Keywords: electronic health records; patient portals; patient selection; race factors; racial disparities; research subject recruitment.

Conflict of interest statement

Conflicts of Interest: DBB reports current external funding to RTI from Janssen Pharmaceuticals and The John Merck Fund and prior external funding to RTI from Orchard Therapeutics, Travere, BioMarin, and Sarepta Pharmaceuticals. RTI also received donated reagents and equipment from Asuragen.

RSP reports prior external funding to RTI from Inflexxion, a subsidiary of Uprise Health, and Parent Project Muscular Dystrophy (PPMD) with support for PPMD’s Patient Preference Research program provided by Solid Bioscience and Pfizer.

LMG reports receiving grants from Janssen Pharmaceuticals, the John Merck Fund, Sarepta Therapeutics, Muscular Dystrophy Association, and donated reagents and equipment from Asuragen, outside the submitted work.

AYG reports current external funding to RTI from Janssen Pharmaceuticals, the John Merck Fund, the Foundation for Angelman Syndrome Therapeutics, Alcyone Therapeutics, and Lipedema Foundation, and prior external funding to RTI from Orchard Therapeutics, Travere, BioMarin, Sarepta Pharmaceuticals, and the Parent Project Muscular Dystrophy. RTI also received donated reagents and equipment from Asuragen.

SMA reports current external funding to RTI from Janssen Pharmaceuticals, Sarepta Pharmaceuticals, The John Merck Fund, and the Foundation for Angelman Syndrome Therapeutics and prior external funding to RTI from Orchard Therapeutics, Travere Therapeutics, BioMarin, and the EveryLife Foundation for Rare Diseases. RTI also received donated reagents and equipment from Asuragen.

©Lisa M Gehtland, Ryan S Paquin, Sara M Andrews, Adam M Lee, Angela Gwaltney, Martin Duparc, Emily R Pfaff, Donald B Bailey Jr. Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org), 10.02.2022.