Twitting rare diseases on and off the "Jolie effect": A study of twitter affordances for health public debate (360G-Wellcome-200223_Z_15_Z)

This project investigates Twitter use to discuss and build knowledge around rare diseases. It explores the impact of Twitter debate – alone and in combination with mainstream media exposure – on rare disease public discourse. It builds a comparative study of microblogging around two rare conditions that have received different mainstream media exposure: BRCA mutation – the genetic condition brought to the fore by Angelina Jolie’s New York Times op-eds on her decision to undergo preventive surgery – and Lynch Syndrome. BRCA mutation and Lynch Syndrome are comparable as they are rare genetic conditions that increase cancer risk, and their impact on life quality and expectancy may be minimised with preventive surgery. This project aims to show the ways and the extent to which Twitter debate can 1) ease public reasoning on and understanding of rare and/or uncommunicable diseases; 2) facilitate interactions among publics differently engaged in health discourse and 3) intertwine with health discussion that suddenly becomes of news value in mainstream media coverage (like in the BRCA mutation case). Results from this work have the potential to develop a research strand focused on the affordance of Twitter use for patients and lay people to impact public opinion dynamics.