From Stories to Solutions: A Research Cycle Framework for Enhancing Trustworthiness in Studies of Online Patient Narratives

Personal accounts of health care experiences posted to online platforms are a rich source of patient-reported data. Noninteractive narratives, published as one-off accounts, often describe an entire patient journey in one story, featuring transitions through health care settings from prediagnosis to outcome. These coherent perspectives may not be visible or captured in fragmented social media posts or episodic blogs. For researchers seeking patient-reported accounts of care quality across a clinical trajectory, noninteractive online narratives can be an invaluable, easily accessible resource. The challenges and limitations of research utilizing these data may differ from working with interactive patient narratives and include source transparency and credibility, limited or no information about authors, and ambiguity about the health care context and time frames. We outline a framework for addressing these issues in 5 key phases of the research cycle: the conceptual-theoretical approach; locating sources of data; accessing and collecting the data; quantitative profiling to establish demographics, health care events, and time frames; and qualitative analysis utilizing multiple modes of narrative inquiry. We explain the use of this framework in a real-world example: our study of 273 online patient narratives describing health care trajectories in early-onset bowel cancer.