An Empirical Perspective on Epistemic Environments as a Justice Issue for Chronic Disease Patients

Abstract: Epistemic environments can entail epistemic injustice insofar as they shape access to information and condition peoples’ capacity to reason and act as epistemic agents. Recent years have seen substantial concern about the epistemic environment facing people seeking health information in the U.S.; epistemic distortions such as misinformation, misleading reporting, and manufactured doubt pose problems for individuals, who may suffer as a result of acting on such distortions, and for society at large, which may suffer from an increased burden of both disease and distrust. However, there is little empirical research about how patients experience this fraught epistemic environment in relation to their in/capacitation as epistemic agents. Drawing on two years of ethnographic fieldwork with people living with complex chronic diseases, this presentation will address this question. This population is an apt case study because they experience these challenges with particular acuity; their diseases are often challenging to diagnose and treat, and the attendant uncertainty renders them particularly vulnerable to epistemic distortions. I find, first, that expectations related to “good” patienthood are often contradictory with respect to epistemic agency; patients are expected both to educate themselves in order to proactively manage their health and to defer to clinician expertise. Second, patients’ epistemic capacities are considerably constrained by information and health care infrastructures. Third, resources intended to help patients navigate fraught epistemic environments often do not address the challenges they find most incapacitating. The paper concludes by considering how these insights might inform efforts to construct a more just epistemic environment.