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)

Academic programs in the medical/health humanities have proliferated widely in recent years, and the professional, academic, and cultural drivers of this growth promise sustained new program development. In this article, we present the results of a survey sent to representatives of one hundred twenty-four baccalaureate and ten graduate programs in the medical/health humanities to assess the experiences and needs of existing programs. Survey results confirm the interest in and need for a descriptive toolkit as opposed to a prescriptive manual; indicate (...) what data and materials are most needed to support the successful development of new academic programs in the field; and identify areas for future research. Recognizing a need for program development resources, the Health Humanities Consortium has initiated the creation of a comprehensive online toolkit. We discuss survey results and the toolkit in relation to the drivers of new program growth. Finally, we describe resources now available through the HHC’s new online program toolkit, including existing programs; sample syllabi; sample curricula templates; program rationale; proposal templates; and graduation data. (shrink)

People with disabilities (PWD) comprise a significant part of the population yet experience some of the most profound health disparities. Among the greatest barriers to quality care are inadequate health professions education related to caring for PWD. Drawing upon the expertise of health professions educators in medicine, public health, nursing, social work, and physician assistant programs, this forum showcases innovative methods for teaching core disability skills and concepts grounded in disability studies and the health humanities. Each of the essays offers (...) practical guidance for developing curricular interventions appropriate for students at various levels of training and familiarity with disability to be implemented in classroom discussions, case-based learning, lectures, panels, and clinical simulations across the full spectrum of pre-health and health professions education. (shrink)