Fluid Systems, Biologies, and Digital Activisms: The Open Source Data Movement Among Type 1 Diabetics (T1D)

Gottlieb Samantha D, Washington DC

Investigators

Abstract

The proposed research will analyze a U.S.-based patient advocacy movement of type 1 diabetics (T1D). Patients of T1D are managing their health condition through the increased use of digital and mobile technologies. The proposed research will document how patients are controlling and customizing their health technologies via open source software. In addition it will provide data on individualized health management that can be used to shape broader social and regulatory processes. The proposed research will examine how data tracking practices are being embraced and critiqued by users. The proposed research will also contribute to educating stakeholders about health data and analyses used by users and experts alike. Results from this proposal will be of interest to users, policy makers, health care practioners and patient advocates working with data access from medical devices. By studying the T1D patient advocacy, the proposed research will identify insights into how new technologies in healthcare will shape patients' relationships to their health and bodies. The proposed research will provide an anthropological perspective on how T1D patients re-purpose and reclaim healthcare technologies. It will explore how digital tools and online communities reshape medical and scientific practices. Research sites will include digital and in-person data collection. Through ethnographic, mixed methods data collection, the study will trace the multiple contexts -- legal, medical, digital and material -- in which T1D patient activists advocate for improvements to managing their condition. The proposed research will analyze the relationship between patient activism and contemporary technologies, to consider how technologies reconfigure forms of patient advocacies, and how patient advocates may reshape technologies. The proposed research will identify how movements that seek data liberation, corporate transparency, and open source digital platforms, unrelated to healthcare, may inform T1D individuals' health seeking behaviors and health information. The proposed research will examine whether software and internet hacking cultures reconstitute American pharmaceutical, FDA regulatory, and clinical practices. The insights from the proposed research will contribute to understanding patients' experiences as citizens, consumers, and owners of their health data, as well as how data is embodied and lived.