Using patient portals for large-scale recruitment of individuals underrepresented in biomedical research: an evaluation of engagement patterns throughout the patient portal recruitment process at a single site within the All of Us Research Program

J Am Med Inform Assoc. 2024 Oct 1;31(10):2328-2336. doi: 10.1093/jamia/ocae135.

Abstract

Objective: To evaluate the use of patient portal messaging to recruit individuals historically underrepresented in biomedical research (UBR) to the All of Us Research Program (AoURP) at a single recruitment site.

Materials and methods: Patient portal-based recruitment was implemented at Columbia University Irving Medical Center. Patient engagement was assessed using patient's electronic health record (EHR) at four recruitment stages: Consenting to be contacted, opening messages, responding to messages, and showing interest in participating. Demographic and socioeconomic data were also collected from patient's EHR and univariate logistic regression analyses were conducted to assess patient engagement.

Results: Between October 2022 and November 2023, a total of 59 592 patients received patient portal messages inviting them to join the AoURP. Among them, 24 445 (41.0%) opened the message, 8983 (15.1%) responded, and 3765 (6.3%) showed interest in joining the program. Though we were unable to link enrollment data with EHR data, we estimate about 2% of patients contacted ultimately enrolled in the AoURP. Patients from underrepresented race and ethnicity communities had lower odds of consenting to be contacted and opening messages, but higher odds of showing interest after responding.

Discussion: Patient portal messaging provided both patients and recruitment staff with a more efficient approach to outreach, but patterns of engagement varied across UBR groups.

Conclusion: Patient portal-based recruitment enables researchers to contact a substantial number of participants from diverse communities. However, more effort is needed to improve engagement from underrepresented racial and ethnic groups at the early stages of the recruitment process.

Keywords: patient portal; research recruitment; underrepresented in biomedical research.

MeSH terms

  • Adult
  • Aged
  • Biomedical Research*
  • Electronic Health Records*
  • Ethnic and Racial Minorities
  • Female
  • Humans
  • Male
  • Middle Aged
  • Minority Groups
  • Patient Participation
  • Patient Portals*
  • Patient Selection*
  • United States
  • Young Adult