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

Abstract

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 wordfrequency 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.

“It becomes your whole life”—Exploring experiences of reciprocal translocation carriers and their partners

“…Although the internet was not perceived as a valuable resource regarding the science and implications of the translocation, online support groups had an important role in adaptative coping. The role of online support groups in meeting the informational and emotional needs of patients has been previously well described (Bender et al, 2011; Malik & Coulson, 2010; Vasilica et al, 2021).…”

“…The role of online support groups in meeting the informational and emotional needs of patients has been previously well described (Bender et al, 2011;Malik & Coulson, 2010;Vasilica et al, 2021).…”

“…Participants commented on the benefits of sharing their experience with peers, adding to previous evidence of the invaluable contribution of support groups (Bender et al, 2011), (Malik & Coulson, 2010) (Vasilica et al, 2021). Lastly, given the potential harm of not knowing children's carrier status, referral to genetic counseling may assist parents in contemplating the considerations around carrier testing in their children.…”

Digitizing nursing: A theoretical and holistic exploration to understand the adoption and use of digital technologies by nurses

“…Healthcare professionals must be able to recognize the potential value of technology and data and ideally be involved in the development of new digital infrastructure to ensure that digital technologies work for our healthcare systems, our patients and answer the questions which traditional research methods are unable to answer. Existing research on the utilization of such technologies has found improved health behaviour and treatment compliance (Ibrahim et al, 2022), the satisfaction of patient information needs (Allen et al, 2016; Garwood‐Cross et al, 2021; Vasilica, Garwood‐Cross, et al, 2021; Vasilica, Oates, et al, 2021) and improved service metrics (Wynn & Scholes, 2022). Digital technologies can be utilized in a number of ways such as utilizing digital data to improve health research, joining up provision between services and improving patients' self‐management of conditions to influence health outcomes.…”

Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation’s online community

“…For instance, Ma and colleagues collected survey data via polycystic kidney disease related Facebook groups to explore the information needs of individuals with polycystic kidney disease and their caregivers [14]. Another study also assessed the information needs of individuals with CKD, but focused on IgA nephropathy by analyzing the posts and comments of groups users of the UK IgA nephropathy Facebook group [15]. In addition, a study in UK assessed the importance of a localized online network in supporting its members dealing with kidney disease, including patients, families and caregivers [16].…”