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.

Background: Commitment to patient engagement in research provides significant opportunities to advance our understanding of patients’ experience whilst fostering sensitivity and progress in research. Yet, people who are frail or seriously ill are rarely given the opportunity to partner across the course of a research study. Little is known about their impact on the conduct of research and the best ways of ‘meaningfully’ involving them as research partners. A series of studies using multiple methods were conducted to explore meaningful engagement of frail and seriously ill patients as partners in research. Study 1: A systematic review with narrative synthesis was conducted to describe the engagement of frail and seriously ill patients as research partners across the research cycle. Thirty eligible studies showed emerging evidence that research partnerships with frail and seriously ill patients can be achieved successfully. Frailty and serious illness present legitimate concerns due to the vulnerability of patient-partners but can be successfully mitigated when researchers ensure timing and methods of engagement are flexible and practical, and emotional needs of patient partners are consistently addressed. Study 2: A qualitative sub-analysis of the prior systematic review was conducted to identify ethical considerations of engaging frail and seriously ill patients as research partners. Findings revealed that researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address relational and intellectual power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. Study 3: An analytic autoethnography was conducted to explore how patient engagement is embodied and situated during serious illness. Findings provide a unique contribution to the discourse on representation and contested identity. Current concerns of tokenism are countered through recognition of ways in which patients ‘find’ and ‘make’ meaning through research partnerships. Partnering with seriously ill patients offers enormous potential to advance research through harnessing the power of embodied knowledge production. Conclusion: This dissertation highlights the importance of ensuring that the voices of frail and seriously ill patient-partners’ are heard first-hand. It further demonstrates, the current methodological imperative of patient engagement requires novel approaches to both enacting and evaluating patient engagement.