Research, Teaching, and Community Outreach Initiatives
A. The “new patient”: interdisciplinary and international perspectives
Nancy Tomes (History) and Lisa Diedrich (Women’s and Gender Studies)
This initiative creates a network of faculty and graduate students interested in the theories and practices of patient/consumer empowerment in health care settings. We explore the emergence of these theories and practices since the 1970s, and investigate how they've worked—and not worked—since then. Our purpose is to create a dialogue among faculty about the varied research on this topic being conducted in different disciplines, not only in our own fields (history and women's studies) but also in preventive medicine, economics, public health, medical humanities, sociology, anthropology, and philosophy. We are particularly interested in looking at the way conceptions of difference (gender, class, and racial) have figured in discussions of patient/consumer roles and behaviors.
In the last twenty-five years, the American health care scene has been transformed by the consumer health movement. There is a widespread perception that the health care “playing field” has been leveled since the 1970s, with patients gaining a new sense of their rights, often at the expense of their physicians’ authority. But the extent and implications of the consumer health revolution remain poorly understood. Scholars are now debating how much has really changed since the 1970s; have efforts at cost containment offset progress toward a more patient centered medicine? Does the model of patient “empowerment” impose too great or too little a burden on patients? These discussions have emphasized the importance of class, race, and gender differences, both in the level of so-called health literacy, and in access to health care resources, as critical factors.
Scholars in many disciplines are vitally interested in these issues, but they often have little opportunity to share findings and perspectives with each other. In part, that lack of opportunity reflects structural problems. At Stony Brook, faculty interested in these issues are divided by Nichols Road. They have limited time or incentive to communicate with each other. The problems are also conceptual. Many researchers, especially in economics and political science, remain untouched by the “cultural turn”; they continue to look to more sophisticated means of data gathering and analysis as the best means to foster needed improvements in health care institutions. Social scientists and humanists influenced by the new science studies have a very different conception of what it means to study “the patient.” Scholars coming out of a science studies background (such as ourselves) approach our work with an understanding that we rely on methodologies and assumptions that themselves are deeply politicized and invariably flawed. So we do our work with a sense of this paradox: we want better to represent “the patient” and “the public” yet we do so with a keen sense of how uncertain that claims making process has become, both theoretically and practically. In particular, incorporating the complexity of gender, racial, and class distinctions into these models poses a daunting challenge.
Whatever our field of interest, we all work with a poorly developed conceptual “toolkit” with which to generalize across disciplines about the agency and interests of patients in all their diversity. Social scientists inherit an academic predisposition toward reductionist, often contemptuous conceptions of “the public” and/or “public opinion.” Otherwise sophisticated analyses may be marred by cartoonish conceptions of rational vs. irrational patient actors. Unexamined gender, racial and class stereotypes abound in these discussions. For example, in some discussions, women are portrayed as “better” patient/consumers than their male relatives, while in others they appear as overly concerned with physical appearance and prone to health faddism. Similar contradictions appear in discussions of other categories of patient/consumers, including African Americans, the working poor, and the elderly.
In order to move ahead, then, we need to look more closely at how concepts of the “public interest” or the "patients’ interest” function in academic discourse. What sorts of evidence do we use to define and articulate those interests? How do we move from anecdote and narrative—a style of argument that can always be countered by different anecdotes and narratives—to a more convincing style of “policy narrative and argument”? How do we include a more sophisticated analysis of how gender, racial, and class differences influence models of patient empowerment?
To learn more about the New Patient Initiative, or to become part of the network, please contact Lisa Diedrich (firstname.lastname@example.org).
FOCUS: On Women & On Diversity, State University of New York at Stony Brook is an organization dedicated to fostering intellectual discourse about diversity issues affecting Stony Brook University students through the means of creative expression, while promoting and maintaining an inclusive campus community. FOCUS: On Women & On Diversity aims to encourage honesty and integrity in undergraduate student dialogue by providing space to share experiences and thoughts through on-campus events as well as in FOCUS: On Women & On Diversity Magazine as a testament to and celebration of the diversity of Stony Brook University.
Focus: On Women & On Diversity website: http://focusmagazinesbu.blogspot.com/
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