Recognizing Patient Partner Contributions to Health Research

Abstract

Patient engagement in research has many benefits including the alignment of research aims, projects, and outcomes with those of the ultimate end-user. As a result, patient engagement is becoming increasingly established in many areas of health research. Missing from this growing body of evidence are details about how patient partners (i.e., individuals with lived experience of a health condition including informal caregivers, family and friends) are compensated for their contributions as well as existing barriers or challenges to compensation. The overall aim of my thesis is to synthesize and assess the current landscape of patient partner compensation. First, I conducted a systematic review that identified a cohort of published patient engagement research and assessed the prevalence of reporting compensation and identified current compensation practices. Second, we surveyed researchers identified by the systematic review and their affiliated institutions to understand researcher attitudes towards compensation and any experienced barriers and challenges to offering financial compensation to patient partners. Third, we conducted a scoping review to synthesize available guidance and policy documents that inform patient partner compensation. Broadly, these projects found that: 1) reporting of patient partner financial compensation is modest and non-financial methods of compensation (e.g., co-authorship) are reported more often, 2) researchers are generally positive about their abilities and intend to offer financial compensation to patient partners, however institutional barriers including lack of policy or support persist, and 3) the majority of identified guidance recommend offering financial compensation to patient partners and discuss benefits of such practices including fostering a sense of equality between researchers and patient partners. Findings from this thesis may influence research practices by informing stakeholders of the benefits of offering financial compensation to patient partners and guiding the development of compensation strategies. Lastly, findings may inform implementation strategies at the institutional and funder level, including adoption of guidance and procedure, to better support researchers in navigating compensation.