As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiatives internationally. Through our exclusive patient perspective, we provide insight into the reasoning and motivation that many patients are now awakening to as to why lived experience is a value that organizations need to recognize and support in concrete ways. We explore the core principles that an organization needs to consider and adopt when developing compensation policies for their engagement practices with patients and family members. Organizations face an ongoing challenge to achieve diversity among their patient advisors so that all segments of the community they serve are represented. In particular, marginalized populations are confronted with financial and social determinants that are often barriers to full inclusion. Comprehensive compensation policies overcome these barriers. While there is some guidance available from organizations like PCORI, the predominant culture in health care resists the notion of compensation. In addition to defining core principles behind compensation, we outline how to put those principles into practice in a valid, credible manner that honours and values the contributions of patients and families whether in quality improvement or health research.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)