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Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: Observational Study
Lisa M Gehtland1, Ryan S Paquin1, Sara M Andrews1
1RTI International, Research Triangle Park, NC, United States.
Insights
Patient portals effectively recruit research participants, but disparities exist. Black women and those in rural areas showed lower engagement in opening invitations and enrolling in studies.
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.
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://clinicaltrials.gov/ct2/show/NCT03655223.
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