Abstract

SECO-SAUCES, María Olga  and  RUIZ-CALLADO, Raúl. Use of Web 2.0 in virtual communities of patients with rare diseases in Spain. Comun. soc [online]. 2020, vol.17, e7384.  Epub Jan 27, 2021. ISSN 0188-252X.  https://doi.org/10.32870/cys.v2020.7384.

This work aims to ascertain whether the communication resources of the Web 2.0 used in virtual communities of patients with rare diseases successfully provide useful information and improve the health conditions of those affected by rare diseases. This observational study conducted on the websites of 80 organizations shows that these communities of social networks are indeed the preferred means of health-related communication for those affected and they provide a helpful mutual support network. The collective knowledge generated fosters co-participation in decision-making and provides a more focused approach to care for patient needs.

Keywords : Diseases; patients’ portals; social networks; communication in health; Web 2.0.