What Do Patients and Caregivers Want? A Systematic Review of User Suggestions to Improve Patient Portals

AMIA Annu Symp Proc. 2021 Jan 25:2020:1070-1079. eCollection 2020.


Significant investments have been made in patient portals in order to provide patients with greater access to their medical records, as well as to other services such as secure electronic communication with their healthcare provider(s). Unfortunately, overall, patient adoption and use of patient portals has been lower than expected. According to the user-centered design philosophy, including end-user voices in all stages of the design process is critical to a technology's success. Thus, as a part of a larger systematic review, we examined the patient portal literature and identified 42 studies that reported patient's or their caregiver's suggestions to improve patient portals. The results suggest that patients and caregivers want patient portals to (i) support human connection (e.g., virtual patient-provider interactions), (ii) give patients more control (e.g., over their medical record) and be designedfor the variation in patient and caregiver experiences, and (iii) be innovative (e.g., provide contextualized medical advice).

Publication types

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

MeSH terms

  • Caregivers*
  • Electronic Health Records
  • Health Personnel
  • Humans
  • Patient Participation
  • Patient Portals*
  • Patients*