Bridging the gap between patients and carers : The case of rare disease patient-advocacy actors. (360G-Wellcome-101785_Z_13_Z)

This project investigates the relationship between advocacy action and the empowerment of patient communities. Empowerment is here understood as patients participatory action in decision-making on disease research and treatment. The study specifically focuses on rare disease patient-advocacy actors because according to the scientific literature they are among the most empowered groups in the health sector and may serve as a model for other patient groups that are still struggling to get particip atory power in policymaking and research implementation. The project will develop four lines of investigation focused on specific elements of mobilization: [LI1] processes of information sharing among patients, health care professionals, institutions and policymakers; [LI2] lobbying strategies aimed at bolstering awareness in the institutional polity; [LI3] campaigning strategies aimed at generating awareness in the general public; [LI4] fundraising strategies aimed at generating economic suppor t for the development of drugs, treatments, and services. The investigation will examine a sample of rare disease patient-advocacy groups from the E.U. and the U.S. Web Content Analysis techniques (qualitative textual analysis combined with Hyperlink Network Analysis) will be used to study processes of information sharing, while interviews with organisation representatives will provide insiders information on lobbying, campaigning, and fundraising.