Changing Health-Related Behaviors 1: Patient-Oriented Research and Patient Engagement in Health Research.

Abstract

Engaging with patients and families is largely routine at the healthcare service or provision level. The concept of patient engagement in health research has a more recent history but is now often endorsed by leading journals and funders. Often described as research being done with patients, rather than "to" or "about" them, patient-oriented research is distinguished by patients serving as research partners rather than passive study subjects. It is generally accepted that patient engagement in health research is worthwhile and can contribute to better quality research. However, questions remain about how to do it, what values underlie it, and how patients can be engaged as partners in health research. In this chapter, we attempt to answer these questions and provide tangible examples of patient-oriented research in our province of Newfoundland and Labrador (NL), Canada. While there is no single approach to patient engagement in health research, we hope the examples provided herein help demonstrate how it might be done and assist research teams to better integrate and utilize patients' valuable input.