Mobile Knowledge: HIV Patients’ Encounter with Endocrinology

Abstract

Tracing the movement of new medical information from the laboratory to individual consumers is a challenge to communications theorists and social scientists alike. This article adopts the position of the social study of medicine, which takes into account the impact of people's perceptions of disease on treatment decisions and outcomes, to locate instances of the movement of information-and its limitations-in a unique setting: a metabolic disorders clinic for HIV-positive patients. Analysis of data from a participatory observation study at the clinic reveals that the clinician, inculcated into endocrinology, must adapt new information to enable communication with patients, who hold a different view of the body heavily informed by virology. This adaptation also occurs in the reverse, as patients adjust their thinking to make room for new information that will directly impact their treatment decisions.Keywords: Doctor-patient communication; Clinical ethnography; HIV; Endocrinology; Social studies in medicine Résumé : Retracer le transfert de nouvelles informations médicales du laboratoire au consommateur pose un défi au théoricien en communication tout autant qu'au savant en sciences humaines. Cet article a recours aux études sociales en médecine, où l'on étudie les perceptions des gens à l'égard de la maladie et les effets de celle-ci sur les traitements, afin de situer des exemples de transferts d'information dans un emplacement singulier : une clinique pour les perturbations métaboliques qui traite les patients atteints du VIH. L'analyse de données provenant d'une observation participante menée à la clinique révèle que le clinicien, avec son expertise en endocrinologie, doit reformuler de nouvelles informations afin de mieux communiquer avec ses patients, car ces derniers ont sur le corps un point de vue différent, fortement influencé par la virologie. Cette reformulation a aussi lieu dans le sens inverse, car les patients doivent ajuster leurs perceptions afin de mieux intégrer de nouvelles informations qui auront une portée directe sur leurs décisions à l'égard de leur traitement.

Cancer's Margins: Trans* and Gender Nonconforming People's Access to Knowledge, Experiences of Cancer Health, and Decision-Making

“…Cancer's Margins is informed by the Social Study of Medicine (SSM)—a research approach which proceeds by means of the documentation and archiving of the various signs and practices that together, make up medical systems where “conceptions of diagnosis, origin, and social effects of a disease differ.” 67 Tracing the genealogical movements of knowledge, how it is accessed, used, and mobilized, can help us to create a public archive that documents and analyzes how it is that cancer is “done.” This analysis of cancer as “performative” focuses on cancer as a collection of knowledge practices by trans* and gender nonconforming people and seeks to describe how it is that gender marginality functions as a very specific (albeit intersectional) location within which people encounter, resist, and author cancer health and treatment experiences and knowledge practices.…”

Awkward Choreographies from Cancer's Margins: Incommensurabilities of Biographical and Biomedical Knowledge in Sexual and/or Gender Minority Cancer Patients’ Treatment

“…Cancer's Margins adopts the general theoretical orientation known as the Social Study of Medicine (SSM): an empirico-theoretical, sociocultural approach to the study of health as coextensive with (a) the study of knowledge, and (b) the treatment of knowledge and its uneven mobilities within and across divides as located within complex biopolitical systems of knowledge (Diedrich 2007;Mol 2002;Patton 2007;Spurlin 2018). We enlist narrative methods so as to treat knowledge archeo-genealogically; that is, as multiple, complex and embedded in knowledge ecologies that constitute local "assemblages of intelligibility" over time and across communities.…”

Feeling Well and Having Good Numbers

“…Hence, patients find that their know-how and knowledge about CKD is limited. Patton (2007) finds that, when HIV patients seek endocrinologists for lipodystrophy (a redistribution of fat deposits in the body as a result of taking certain HIV medications for a long time), these patients bring the discourse of virology to bear on endocrinology because the former is the medical discourse in which they have been long immersed. Similarly, renal patients in the Clinic became immersed in the CKD care culture that tends to be driven by, but not ultimately determined by, biomarker measurements.…”