Characteristics of Patients and Proxy Caregivers Using Patient Portals in the Setting of Serious Illness and End of Life

J Palliat Med. 2021 Nov;24(11):1697-1704. doi: 10.1089/jpm.2020.0667. Epub 2021 May 28.


Background: There are few studies examining the usage and utility of patient portals among seriously ill and end-of-life populations and their caregivers. Objective: The aim of this study was to describe portal user characteristics among patients and their caregivers (proxy login) at two time points: (1) the 12 months following an electronic medical record flag for serious illness and (2) during the last 12 months of life. Methods: A retrospective cohort analysis of Kaiser Permanente Colorado (KPCO) patients with serious illness, as defined by Kaiser Permanente's prognostic algorithm, and their proxy caregivers was performed for the two time periods. Use was characterized as (1) the discrete number of days the portal was used and (2) the number of days that portal features were accessed. Differences in use by user characteristics were assessed. Results: Patients flagged for serious illness (N = 6129) were 70.4 ± 14.2 years of age, and used the portal on average 50.4 days. Patients (N = 6517) in the last year of life were 76.7 ± 13.7 years of age and used the portal on average 43 days. Caregiver proxy use of the portal was low in both cohorts. Patients who were older, female, non-White, and healthier were less likely to use the portal. Conclusions: In comparison with overall KPCO portal use and recent patient portal studies examining use patterns, patient portal use was high among patients flagged with serious illness and nearing the end of life. However, because use was associated with age, gender, and race, addressing barriers to portal adoption among underserved populations and caregiver proxies is key to better leveraging patient portal systems for palliative and end-of-life care.

Keywords: digital health; electronic medical record; patient portal utilization; personal health record.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Caregivers
  • Death
  • Electronic Health Records
  • Female
  • Humans
  • Patient Portals*
  • Proxy
  • Retrospective Studies