The Many Faces of Patient Engagement

Jennifer Gallivan, MPH; Katharina Kovacs Burns, MSc, MHSA, PhD; Mandy Bellows, MSc (Candidate), RN; Carol Eigenseher, B.Ed


J Participat Med. 2012;4 

In This Article

Abstract and Introduction


As the concept of patient engagement is increasingly accepted and valued among health care stakeholders, so has the number of terms and definitions used to describe and capture the same or similar activities or experiences across various institutional settings; by different health disciplines and administrations; in different countries; and by patients themselves. This study was conducted to gain a more clear understanding of the term "patient engagement" and what it means to different stakeholders in different health settings. Using focus groups and interviews with key stakeholders (patients, health providers and administrative leaders within one large provincial health system) and literature review, the study found a lack of consistency in terminology and definitions around the concept of patient engagement. It was evident that defining patient engagement is very complex, but also that there is a need for common language in patient engagement. All stakeholders must have the same expectations and understanding in order to achieve meaningful and successful patient engagement.


With the emerging notion that patients are critical stakeholders in their health care and decision making, patient engagement [1 2] is increasingly recognized as having a major role in improving quality and safety of health care interventions, service delivery, and promoting ideal health care and personal health experiences across the continuum of care. While widespread efforts at patient engagement are relatively new, it continues to grow, as do the number of terms and definitions used to describe and capture patient engagement activities or experiences.

As part of a larger research study, this study, as described by Arksey and O'Malley,[3] was proposed to include a review of both published and gray literature, as well as to report the result of a number of focus groups and interviews with patients and families, service providers, and administrative leaders.

One of the key themes that emerged from a preliminary review of the literature and focus groups was the variation in terminology and definitions used to describe patient engagement. This led to formulation of research questions which guided this study: What are the different terms used for similar kinds of defined or described activities? How many ways are there to define or describe "patient engagement?" What are the elements or components of "patient engagement" that are common across these terms?