CEU Cardenal Herrera University, designated by FEDER as 2015 seat of the Observatory for Rare Diseases, OBSER

The Research Group for Disability and Communication (GIDYC) at CEU-UCH will this year lead the activities the Observatory, which consists of investigators in communication at seven universities, carry out

The members of the GIDYC group, which in 2015 will manage OBSER activities.
The members of the GIDYC group, which in 2015 will manage OBSER activities.

The Spanish Federation of Rare Diseases (FEDER) designated CEU Cardenal Herrera University as 2015 seat of OBSER, the Spanish Observatory for this kind of diseases. The Research Group for Disability and Communication (GIDYC) at CEU-UCH will manage all activities OBSER carries out this year. GIDYC is headed by Josep Solves Almela, professor at the Department of Communication and Journalistic Information at CEU-UCH.

FEDER appreciated the interdisciplinary and interuniversity character of the proposal CEU-UCH presented for the bidding process for the 2015 leadership of OBSER. It also appreciated the continuity the GIDYC research team displays regarding investigation into the attention rare diseases receive in the media. The team applied data mining techniques on data compiled by, for instance, FEDER to introduce new lines of analysis on political advocacy and the present situation in Spain of people affected by such diseases.

The members of OBSER teach and research at CEU-UCH Cardenal Herrera University, University of Almería, University of Valencia, University of Barcelona, Open University of Catalonia, University of the Balearic Islands and University of Kenty (United Kingdom). Yet, the project’s core participants for 2015 will be members of the GIDYC group. GIDYC has been part of OBSER since October 2013, and, since 2011, has published several pioneering analyses on the media treatment of these diseases.

 

Research award

GIDYC was awarded the ‘Ángel Herrera’ prize for the best investigation in the field of Communication Sciences in January of 2012 for their publication ‘Challenges and communicative strategies of rare diseases: Medical investigation as a reference’. It was written by Antonio M. Bañón and Javier Fornieles, from the University of Almería, and Josep Solves and Inmaculada Rius, from CEU-UCH. The prize recognized the work as the first in Spain to research news coverage on these pathologies and, considering the systematic and comprehensive nature of the analyses carried out by the GIDYC and their international ramifications, as a unique feat in the whole of Europe.

The research carried out by the GIDYC group brings to light that while the most popular national media in Spain have progressively been paying less and less attention to these pathologies, regional media have stepped up their attention to the topic. Coverage has shifted from newspapers to television, with newsmagazines and human interest programs frequently showing interest. Human interest programs, however, tend to frame the dramatic over the medical aspect.

The members in the GIDYC team who research media coverage on rare diseases are Josep Solves, Inmaculada Rius, Anunciación Ramírez and Ángels Álvarez, all professors in the Degree in Journalism at CEU-UCH, and Sebastián Sánchez, professor at the University of Valencia.

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