Doctoral Dissertation Research: Patient-Led Research Practices in Complex Chronic Illness Communities

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This award is funded in whole or in part under the American Rescue Plan Act of 2021 (Public Law 117-2). Open sources have become an important resource of health information, particularly for people living with illnesses that may not be well understood. For these patients, for whom diagnosis and treatment processes may take a great deal of time and involve protracted experiences of medical uncertainty, new forms of digital media can be a crucial resource for accessing information and peer support. In some cases, informal patient research has succeeded in generating clinically important insights about emerging and uncertain illnesses. In addition to providing training for a graduate student in scientific methods of data collection and analysis, the findings and data would be disseminated to improve the public's understanding of science and the scientific method, with important implications for improving clinical practice and patient care.This doctoral dissertation project uses ethnographic methods to examine how people living with medically underdetermined chronic illnesses use online tools and forums to connect with peers, develop strategies for manage their symptoms, and conduct informal research about their conditions. This research investigates three main questions. How do online communities help patients navigate ambiguity and uncertainty with respect to their health? How do they collaboratively find and produce information about their conditions? In what ways do these practices impact the trajectories of their illnesses? This project use observational research in online groups for complex chronic illness patients, interviews with group participants, and narrative analysis of media produced by complex chronic illness patients. Analysis illuminate the ways in which participants use digital technologies to collaboratively develop new conceptual frameworks for understanding medically uncertain illnesses. This research anticipates producing data of interest to clinicians and public health practitioners about patient experiences of medical uncertainty. It will also have implications for social scientists with respect to the role of the internet in emerging cultural practices of knowledge production.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.