Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study

Abstract

Background: The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive.

Objective: The primary objective of this research was to explore the views of participants enrolled in an electronic health record portal access trial regarding the resultant influence of this technology on their feelings of patient empowerment.

Methods: The exploration of patient empowerment within a digital health context was done with participants in a tethered patient portal trial using interpretive description. Interpretive description is a qualitative methodology developed to pragmatically address clinical health questions. Patient demographics, self-reported health status, and self-identified technology adaptation contributed to the assessment of empowerment in this qualitative approach.

Results: This research produced a view of patient empowerment within the digital health context summarized in two overarching categories: (1) Being Heard and (2) Moving Forward. In each of these, two subcategories further delineate the aspects of empowerment, as viewed by these participants: Knowing More and Seeing What They See under Being Heard, and Owning Future Steps and Promoting Future Care under Moving Forward. This work also highlighted an ongoing interconnectedness between the concepts of patient empowerment, engagement, and activation and the need to further articulate the unique aspects of each of these.

Conclusions: The results of this study contribute needed patient voice to the ongoing evolution of the concept of patient empowerment. In order to move toward more concrete and accurate measure of patient empowerment and engagement in digital health, there must be further consideration of what patients themselves identify as essential aspects of these complex concepts. This research has revealed relational and informational elements as two key areas of focus in the ongoing evolution of patient empowerment operationalization and measure.

Keywords: digital health; electronic health record; patient empowerment; patient engagement; patient portal.

Figure 1

Participants’ age ranges.

Figure 2

Self-identified health status of participants ranging from well to acutely ill with chronic illness(es).

Figure 3

Technology adoption by participants.

Figure 4

Interpretive categories identified in the qualitative study.