Identifying information needs of patients with IgA Nephropathy, using an innovative social media stepped analytical approach

Vasilica, CM; Oates, T; Clausner, C; Ormandy, P; Barratt, J; Graham-Brown, MPM

Abstract

Introduction
Increasingly people with kidney disease are using social media to search for medical information and to find peer-support. IgA nephropathy (IgAN) predominantly affects young adults, demographically the biggest users of social media. This paper presents an innovative analysis of social media interactions to identify unmet education and information needs of IgAN patients.

Methods
Following ethical approval for the study, the IgA Nephropathy Support UK Facebook group (https://www.facebook.com/groups/915274415226674) granted us permission to anonymously collect and analyse 1959 posts and comments from 498 group users. An initial patient focus group and quantitative word frequency analysis created an initial categorisation matrix which was iteratively refined following serial analyses of the social media database to generate a final categorisation matrix of needs. We examined 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: diet, symptoms, diagnosis, treatment and patient co-morbidities. Additionally, patient-clinician communication and the presentation of information were 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 need.

Conclusions
Social media data is an untapped and valuable resource which 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.

Citation

Vasilica, C., Oates, T., Clausner, C., Ormandy, P., Barratt, J., & Graham-Brown, M. (2021). Identifying information needs of patients with IgA Nephropathy, using an innovative social media stepped analytical approach. Kidney International Reports, 6(5), 1317-1325. https://doi.org/10.1016/j.ekir.2021.02.030

• Journal Article Type: Article
• Acceptance Date: Feb 15, 2021
• Online Publication Date: Mar 2, 2021
• Publication Date: May 1, 2021
• Deposit Date: Mar 5, 2021
• Publicly Available Date: Mar 5, 2021
• Journal: Kidney International Reports
• Print ISSN: 2468-0249
• Publisher: Elsevier
• Volume: 6
• Issue: 5
• Pages: 1317-1325
• DOI: https://doi.org/10.1016/j.ekir.2021.02.030
• Publisher URL: https://doi.org/10.1016/j.ekir.2021.02.030
• Related Public URLs: https://www.sciencedirect.com/journal/kidney-international-reports
• Additional Information: Additional Information : ** From Elsevier via Jisc Publications Router **Journal IDs: issn 24680249 **History: issue date 02-03-2021; accepted 15-02-2021