Gender Affirmation Surgery: Understanding and Accounting for the Social and Economic Impacts of Access to Care Through an Institutional Ethnography of Patient Experiences in the Ontario Health System

AbstractInequitable coverage of services between and within provinces and strict criteria to qualify for gender affirming care are barriers that continue to exist for transgender and gender diverse (TGD) individuals trying to access gender affirmation surgery (GAS). Using institutional ethnography (IE), this project aimed to provide evidence supporting an economic reimbursement model that considers the lived experience of TGD patients and their healthcare practitioners in accessing GAS care through Ontario’s health system. Drawing from the experiences of TGD individuals and their healthcare practitioners, this study explored the ways in which social and economic experiences of these populations can be used to inform system level changes in the provision of GAS. OutlineFirst, a theoretical/ontological and methodological approach was established for conducting an institutional ethnography of, and for, economic evaluations, a novel IE approach (Chapter 2). The ways that IE evidence could be integrated into health economic evaluations (IE for economic evaluations) fell into categories of establishing point of view (i.e., using IE standpoint to determine which perspective an economic evaluation should take), considering system(s) scope (i.e., using IE evidence to validate or identify valuations of health), and utilization of textual materials (i.e., contextualizing health system processes through resources and academic literature). The approach developed was situated in the context of current health economics literature related to health equity. How IE evidence may be used for broader assessment of economic evaluations as tools in health policy decision-making (IE of economic evaluations) was also conceptualized. Prior to conducting an IE of or for GAS economic evaluations, an initial traditional economic evaluation was done. To understand the value and economic case for funding GAS in Ontario, a cost-utility analysis (CUA) was performed by estimating the effectiveness of top surgery GAS in Ontario from a conventional health system payer perspective (Chapter 3). To complement the economic evaluation, IE evidence was generated to evaluate the social and economic impacts of GAS from the standpoint of TGD individuals pursuing surgical care as well as healthcare practitioners (HCPs) involved in GAS provision. IE analysis identified barriers (related to principles of the Canada Health Act) experienced by TGD patients in the current OHIP referral pathway and considered how medical ethics principles have been applied to TGD populations undergoing GAS (Chapter 4). Finally, this thesis considered how the IE evidence could be utilized to fill gaps in the scant literature on the range of health and non-health outcomes associated with GAS that are not routinely accounted for in traditional economic evaluations. Applications of this work were also discussed (Chapter 5). IE evidence was applied to conceptualize how future GAS health economic evaluations could incorporate the experiential expertise from TGD patients and providers. Evidence suggested that developing TGD specific health valuations, taking societal perspectives, re-defining health outcomes of importance, and contextualizing TGD health literature were ways in which IE expertise that reflects institutional knowledge could better align economic evaluation model perspectives and outputs. Further IE analysis allowed for critical appraisal of how economic evaluations of GAS provision are assessed by healthcare decision-makers. This work demonstrated how IE evidence can validate or identify important characteristics of health economic evaluations through centering lived experience expertise. It also identified the limitations of an integrated IE approach by critically analyzing the ways in which economic evaluations are utilized in healthcare decision-making.

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