Laura Nimmon

Patient engagement in health research is a multifaceted movement with different values, ideas, and interests animating its practice. Many of these values, ideas, and interests claim to be patient-centered, but the meaning of patient-centeredness tends to shift with perspective. How people understand the nature of the problems of illness plays a large role in how they navigate them and pursue solutions. The creation of collective “patient voices” that articulate “patient perspectives” drawn from “patient experiences” is central to the process of patient engagement in research. This is how patient engagement in research seeks to integrate ‘democratic’ processes within scientific research. In this context, the concerns of the “patient” are no longer medical per se, but civic. While health research systems are in the process of encouraging the transition to patient-engaged modes of research, there is currently little systematic understanding of how patients transform from clinical subjects to civic actors. This process has generated controversy about what a patient perspective is, how exactly it is rooted in patient experience, and how either of these can be represented in a singular voice in public affairs. This dissertation explores how patient research partners in an arthritis research patient advisory board interpret their own experiences of health and illness and how this shapes their perspectives as patient research partners. From this basis, I form a theory of “modes of patienthood” that distinguish different realms of experience and modes of action implied by the term “patient.” To test this theory, I further examine civic patienthood in a second qualitative study of the experience of members of health research networks related to bipolar disorder and chronic kidney disease in their efforts at practicing patient engagement in research. The dissertation concludes with a critical reflection on the meaning of civic patienthood contextualized within history of medicine.

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Belonging is an essential human need. Developing a sense of belonging is important for people for whom academia is a place of learning, teaching, and employment. Academia – also known as educational institutions, higher education, post-secondary, college, or university – is a site of particular interest given the privilege engagement in this environment may imbue on individuals and communities. Moreover, academia is also problematic from the perspective of disabled people due to the ableist expectations embedded within it. Academia, and developing a sense of belonging there, may be particularly important for people from equity-seeking groups, including blind people. The general topic of this dissertation is an exploration of belonging in academia, from non-blind and blind perspectives. Following the introduction, chapter 2 presents a model – the Belonging in Academia Model - that explicates how sense of belonging develops in academia through five dimensions: affiliation, familiarity, acceptance, trusting connections & interdependent relationships, and equity. The dissertation goes on to examine blind and partially blind peoples’ experiences of belonging and non-belonging in academia, elucidating key nuances such as the importance of interdependence, feeling like a burden, and needing to perform as a disabled person. In chapter 3 this dissertation highlights scholarly teaching in the form of a workshop designed using research-based theatre as an affective pedagogical tool. Finally, preceding the conclusion, chapter 4 shares a brief exploration of doing ‘insider’ research as a blind scholar with blind people.

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