This study identifies and explores evolving concepts of trust and privacy in the context of user-generated health data. We define “user-generated health data” as data captured through devices or software and used outside of traditional clinical settings for tracking personal health data. The investigators conducted qualitative research through semistructured interviews with researchers, health technology start-up companies, and members of the general public to inquire why and how they interact with and understand the value of user-generated health data. We found significant (...) results concerning new attitudes toward trust, privacy, and sharing of health data outside of clinical settings that conflict with regulations governing health data within clinical settings. Members of the general public expressed little concern about sharing health data with the companies that sold the devices or apps they used, and indicated that they rarely read the “terms and conditions” detailing how their data may be exploited by the company or third-party affiliates before consenting to them. In contrast, interviews with researchers revealed significant resistance among potential research participants to sharing their user-generated health data for purposes of scientific study. The widespread rhetoric of personalization and social sharing in “user-generated culture” appears to facilitate an understanding of user-generated health data that deemphasizes the risk of exploitation in favor of loosely defined benefits to individual and social well-being. We recommend clarification and greater transparency of regulations governing data sharing related to health. (shrink)

Narrative analysis, creative writing, and interactive reflective writing have been identified as valuable for professional identity formation and resilience among medical and premedical students alike. This study proposes that medical student blogs are novel pedagogical tools for fostering peer-to-peer learning in academic medicine and are currently underutilized as a near-peer resource for premedical students to learn about the medical profession. To evaluate the pedagogical utility of medical student blogs for introducing core themes in the medical humanities, the authors conducted qualitative (...) analysis of one hundred seventy-six reflective essays by baccalaureate premedical students written in response to medical student-authored narrative blog posts. Using an iterative thematic approach, the authors identified common patterns in the reflective essays, distilled major themes, coded the essays, and conducted narrative analysis through close reading. Qualitative analysis identified three core themes and one overarching theme. The premedical students’ essays demonstrated significant self-reflection in response to near-peer works, discussed their perceptions of medical professionalism, and expressed concerns about their future progress through the medical education system. The essays consistently attributed the impact of the medical student narratives to the authors’ status as near-peers. The authors conclude that reading and engaging in reflective writing about near-peer blog posts encourages premedical students to develop an understanding of core concepts in the medical humanities and promotes their reflection on the profession of medicine. Thus, incorporating online blogs written by medical trainees as narrative works in medical humanities classrooms is a novel pedagogical method for fostering peer-to-peer learning in academic medicine. (shrink)

The use of artificial intelligence in healthcare has led to debates about the role of human clinicians in the increasingly technological contexts of medicine. Some researchers have argued that AI will augment the capacities of physicians and increase their availability to provide empathy and other uniquely human forms of care to their patients. The human vulnerabilities experienced in the healthcare context raise the stakes of new technologies such as AI, and the human dimensions of AI in healthcare have particular significance (...) for research in the humanities. This article explains four key areas of concern relating to AI and the role that medical/health humanities research can play in addressing them: definition and regulation of “medical” versus “health” data and apps; social determinants of health; narrative medicine; and technological mediation of care. Issues include data privacy and trust, flawed datasets and algorithmic bias, racial discrimination, and the rhetoric of humanism and disability. Through a discussion of potential humanities contributions to these emerging intersections with AI, this article will suggest future scholarly directions for the field. (shrink)

ArgumentThe deficit model of science communication assumes that the creation and dissemination of knowledge is limited to researchers with formal credentials. Recent challenges to this model have emerged among “e-patients” who develop extensive online activist communities, demand access to their own health data, conduct crowd-sourced experiments, and “hack” health problems that traditional medical experts have failed to solve. This article explores the aesthetics of medical media that enact the transition from a deficit model to a patient-driven model of visual representation (...) and health communication. I present a framework for understanding the role of film and video in patient movements by analyzing the historical transition from researchers filming patients as nameless, voiceless human research subjects to patients recording their own health narratives through activist cinematography. By comparing several approaches to patient-centered video, I argue that imperfect production aesthetics play a critically important role in establishing the credibility of health communications. (shrink)