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

该奖项的全部或部分资金来自《2021年美国救援计划法案》(公法117-2)。开放来源已成为健康信息的重要来源，特别是对于患有可能不太了解的疾病的人。对于这些患者来说，诊断和治疗过程可能需要大量时间，并涉及长期的医疗不确定性体验，新形式的数字媒体可以成为获取信息和同行支持的关键资源。在某些情况下，非正式的患者研究已经成功地对新出现的和不确定的疾病产生了临床上重要的见解。除了为研究生提供数据收集和分析的科学方法方面的培训外，研究结果和数据还将被传播，以提高公众对科学和科学方法的理解，对改善临床实践和患者护理具有重要意义。这个博士论文项目使用人种学方法来研究患有医学上不确定的慢性病的人如何使用在线工具和论坛与同龄人联系，制定管理他们的症状的策略，并对他们的病情进行非正式研究。本研究主要探讨三个问题。在线社区如何帮助患者在健康方面遇到模棱两可和不确定的情况？他们如何协作查找和生成有关其病情的信息？这些做法在哪些方面影响了他们的疾病发展轨迹？该项目使用了对复杂慢性病患者的在线小组的观察性研究，对小组参与者的访谈，以及对复杂慢性病患者产生的媒体的叙事分析。分析阐明了参与者如何使用数字技术协作开发新的概念框架，以了解医学上不确定的疾病。这项研究预计会产生临床医生和公共卫生从业者感兴趣的有关患者医疗不确定性体验的数据。它还将在互联网在知识生产的新兴文化实践中的作用方面对社会科学家产生影响。该奖项反映了NSF的法定使命，并通过使用基金会的智力价值和更广泛的影响审查标准进行评估，被认为值得支持。

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.