IgA nephropathy is the commonest cause of glomerulonephritis in the Western World and predominantly effects young adults, who are active users of social media. This project uses social media data to understand and respond to unmet patient need. It progressed in three interconnected phases Phase 1. Facebook data mining to understand the information needs of people with IgAN. This study shows the gaps in information as diet, symptoms, diagnosis, treatment, co-morbidities and highlights the importance of patient-to-clinician communication, peer advice and employment. Phase 2. A co-production approach to develop information resources to address the gap. Phase 3. Evaluation of resources and impact. The digital method employed for this study, could influence developments for other conditions to understand patients’ online intercations and information gaps.
Team: Prof Paula Ormandy, Dr Cristina Vasilica, Christian Clausner (University of Salford), Dr Tom Oates (UCL Centre for Nephrology), Dr Mathew Graham-Brown, Prof Jonathan Barratt
Funder: Kidney Research UK