“Democratizing” clinical research? efficiency and inclusiveness in an electronic primary care research network

Abstract

This dissertation is a critical ethnography and rhetorical study of the development of an electronic network designed to advance medical research and improve health. Specifically, this study focuses on the network's social and technological affordances of efficiency and inclusiveness to connect communities of primary care providers and clinical researchers to both expand participation in and expedite the research process. By examining the network's technical elements aligned with its social context, the assumptions that influence the choice of technologies, and the network's subsequent design, Brenda L. Hudson explores the network's hierarchical structure and potential democratizing capabilities in clinical research. Through field notes, interviews, and textual analysis, Hudson provides a micro-level examination of the electronic network's development and technical affordances during the program's three-year funded contract. An ethnographic narrative describes how the group functions as a "community of practice" to create a network linking primary care practices with clinical research. Further, Hudson provides a macro-level examination that draws on critical theories of technology and explores to what extent the network might serve as a "democratic" technology through its involvement of previously unprivileged populations in clinical research--primary care providers and patients. Results indicate that assumptions of efficiency and inclusiveness in clinical research--and specifically in the network's technical affordances--provide potential benefits to patients' health by widening the pool of researchers and participants and streamlining the recruitment process. However, manifest in this electronic network, these assumptions also pose potential risks and ethical challenges surrounding private health information and "therapeutic misconception," whereby a research participant believes that enrolling in a research study will provide direct therapeutic benefit. Further results indicate that although the development team has done much to assure a "democratic" development of use of technology by operating as a "community of practice," there exist unintentional asymmetrical hierarchies of who controls and uses the network, favoring primary care providers and practices that already exist in clinical research.