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

博士论文研究：复杂慢性疾病社区中患者主导的研究实践

• 批准号: 2116342
• 负责人: Talia Dan-Cohen
• 金额: $ 1.82万
• 依托单位: Washington University
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-15 至 2024-04-30
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=2116342&HistoricalAwards=false
• 关键词: Doctoral; Dissertation; Research; Patient; Led

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.

该奖项全部或部分根据2021年美国救援计划法案（公法117-2）资助。公开来源已成为健康信息的重要来源，特别是对于那些可能不太了解的疾病患者。对于这些患者来说，诊断和治疗过程可能需要花费大量时间，并涉及长期的医疗不确定性，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，非正式的患者研究成功地产生了关于新兴和不确定疾病的临床重要见解。除了为一名研究生提供数据收集和分析科学方法方面的培训外，还将传播调查结果和数据，以提高公众对科学和科学方法的了解，这篇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疾病的人如何使用在线工具和论坛与同龄人联系，制定管理他们症状的策略，并对他们的病情进行非正式研究。本研究探讨了三个主要问题。在线社区如何帮助患者在健康方面克服模糊和不确定性？他们如何合作寻找和产生关于他们的状况的信息？这些做法如何影响他们的疾病轨迹？本研究采用观察性研究方法，对复杂慢性病患者进行在线群体研究，对群体参与者进行访谈，并对复杂慢性病患者制作的媒体进行叙事分析。分析阐明了参与者使用数字技术合作开发新概念框架的方式，以了解医学上不确定的疾病。这项研究预计将产生临床医生和公共卫生从业人员感兴趣的数据，有关患者的医疗不确定性的经验。它也将对社会科学家在互联网在知识生产的新兴文化实践中的作用产生影响。该奖项反映了NSF的法定使命，并被认为值得通过使用基金会的知识价值和更广泛的影响审查标准进行评估来支持。