Identifying Information Needs of Patients With IgA Nephropathy Using an Innovative Social Media–stepped Analytical Approach

Introduction: The number of people with kidney disease using social media to search for medical information and peer support is increasing. IgA nephropathy (IgAN) predominantly affects young adults, demographically the biggest users of social media. This article presents an innovative analysis of social media interactions to identify unmet education and information needs of patients with IgAN. Methods: Following ethical approval for the study, the IgAN Support UK Facebook group (https://www.facebook.com/groups/915274415226674) granted us permission to anonymously collect and analyze 1959 posts and comments from 498 group users. An initial patient focus group and quantitative word-frequency analysis created an initial categorization matrix that was iteratively refined after serial analyses of the social media database to generate a final categorization matrix of needs. We evaluated narrative data relating to each identified category to define patient narratives relating to each area. Results: A large number of information gaps and unanswered questions were identified relating to the following: diet, symptoms, diagnosis, treatment, and patient comorbidities. Patient–clinician communication and the presentation of information were also drawn out as cross-cutting issues. These themes differed significantly from those identified from the traditional patient focus group, highlighting the value of this novel method for interrogating social media data to understand unmet patient needs. Conclusion: Social media data are untapped and valuable resources that can be used to better understand patient information gaps, leading to the generation of targeted materials to address unmet educational needs. This innovative approach could be replicated across other health conditions.