JMIR Publications

ABSTRACT

Online healthcare platforms where communities of patients share personal accounts of healthcare experiences can be a rich source of patient-reported data. The storied format of these data may offer valuable longitudinal views of patients’ experiences across phases of clinical care and provide insights into the perspectives of marginalised or emerging communities of patients who have not been the focus of research attention. Qualitative healthcare research has yet to capitalise on opportunities to explore these data. Healthcare researchers may be hesitant to work with unsolicited patients’ stories collected from an online environment given the absence of methodological guidance. There is an emphasis in the literature on ethical considerations in Internet-mediated research and a dearth of attention to practical methodological issues that might arise. We address that gap in this paper using the real-world example of our study of diagnostic experiences in patients with early onset colorectal cancer. We elaborate on the five key areas where we found it necessary to tailor the research to accommodate the unique requirements of online narratives: the conceptual framework; locating sources of data; accessing and collecting the data; designing a quantitative component to understand the generalisability of the data; and shaping the qualitative analysis to ensure validity. Research investigating user-generated online narratives supports the agency of patients who have navigated the complexities of illness and care and shared their experiences online. Guidance on how to produce trustworthy translational findings from these unsolicited personal accounts may help empower researchers to explore this untapped resource.