News & Commentary

What Do We Mean By 'Patient Engagement'?


One of the buzz terms often heard in discussions of improving the health care system is “patient engagement.” But what does it mean? The definition changes, says a new analysis in the Journal of Participatory Medicine. “Despite the widespread use of the term ‘patient engagement,’ our study showed significant variations in its conceptualization, testifying that the debate on this issue is still in its infancy,” say the authors of “The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review.”

The debate may be in its infancy; the term certainly isn’t. From 2002 to 2006, the study says, emphasis was placed on “defining the relational nature of patient engagement as a key component of a patient-centered medical paradigm. This probably led authors to link the term patient engagement to more rooted constructs such as therapeutic alliance and patient empowerment. Both approaches focused on patient engagement as a tool to improve patient autonomy and disease self-management.”

But times change, and so did the definition.

When the deep recession of 2008 hit, patient engagement became a way insurers could cut costs by encouraging patients to make better care decisions — a definition still more or less in vogue. “Fully engaged patients are expected to gain major improvements in health status due to more effective public health measures,” the study states. The nature of engagement also changes over a given patient’s experience, according to the researchers, who reviewed 259 studies. They say patient engagement has four stages:

  • Blackout: Patients spiral into a state of emotional, behavioral, and cognitive distress because of the discovery of an illness.
  • Arousal: Patients are hyperattentive to symptoms, sometimes becoming alarmed over bodily reactions that are not threatening and/or connected to their problem.
  • Adhesion: Patients gain the skill and knowledge to adhere to a treatment regimen and find the emotional strength to cope with the illness.
  • Eudaimonic Project: Patients fully come to terms with their disease and accept that “the patient self is only one of their possible selves. They are also able to recognize their internal resources needed to project satisfactory life trajectories for their future.”

Researchers argue that “This approach can help in drafting guidelines for planning interventions able to foster patient engagement in a way that is really fine-tuned with the specific phase of the patient’s experience.”