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.

Study protocol: responding to the needs of patients with IgA nephropathy, a social media approach.

BACKGROUND: IgA nephropathy is the most common cause of glomerulonephritis in the Western world and predominantly affects young adults. Demographically these patients are the biggest users of social media. With increasing numbers of patients turning to social media to seek information and support in dealing with their disease, analysis of social media streams is an attractive modern strategy for understanding and responding to unmet patient need. METHODS: To identify unmet patient need in this population, a framework analysis will be undertaken of prospectively acquired social media posts from patients with IgA nephropathy, acquired from a range of different social media platforms. In collaboration with patients and members of the clinical multidisciplinary team, resources will be created to bridge gaps in patient knowledge and education identified through social media analysis and returned to patients via social media channels and bespoke websites. Analysis of the impact of these resources will be undertaken with further social media analysis, surveys and focus groups. CONCLUSIONS: Patients with chronic diseases are increasingly using social networking channels to connect with others with similar diseases and to search for information to help them understand their condition. This project is a 21st century digital solution to understanding patient need and developing resources in partnership with patients, and has wide applicability as a future model for understanding patient needs in a variety of conditions.

The Social Media Revolution in Nephrology Education.

The past decade has been marked by the increasing use of social media platforms, often on mobile devices. In the nephrology community, this has resulted in the organic and continued growth of individuals interested in using these platforms for education and professional development. Here, we review several social media educational resources used in nephrology education and tools including Twitter, videos, blogs, and visual abstracts. We will also review how these tools are used together in the form of games (NephMadness), online journal clubs (NephJC), interactive learning (GlomCon), and digital mentorship (Nephrology Social Media Collective [NSMC] Internship) to build unique educational experiences that are available globally 24 hours per day. Throughout this discussion, we focus on specific examples of free open-access medical education (FOAMed) tools that provide education and professional growth at minimal or no cost to the user. In addition, we discuss inclusion of FOAMed resource development in the promotion and tenure process, along with potential pitfalls and future directions.