La comunicación en la red de pacientes con enfermedades raras en España

Antonio  Castillo Esparcia; Paloma López Villafranca; Carmen  Carretón Ballester

doi:10.4185/RLCS-2015-1065

Authors

Antonio Castillo Esparcia University of Málaga https://orcid.org/0000-0002-9751-8628
Paloma López Villafranca University of Málaga https://orcid.org/0000-0003-4193-1365
Carmen Carretón Ballester University of Alicante https://orcid.org/0000-0002-4851-9683

DOI:

https://doi.org/10.4185/RLCS-2015-1065

Keywords:

rare diseases, health 2.0, web, blog, communication tools

Abstract

This article presents the results of a study of the communication strategies used by organisations of patients with rare diseases on the internet. Objective: Identify the communication tools these organisations use in the internet to gain social and media visibility and to enable interaction between patients and families. Methods: The study is based on the content analysis of the websites, social networks and blogs of 143 national organisations of patients with rare diseases. In addition, 90 organisations of patients with rare diseases, which represented 63% of the sample of institutions, were interviewed via telephone. Results: 84% of the websites are managed by the organisations’ members, who lack specific training, and only the rest, 16%, are managed by professionals. The communication carried out on the internet by these organisations, be it on websites, social networks or blogs, target patients and their loved ones as well as the rest of the population with similar intensity. However, these organisations do not use tools that enable a more fluid communication for their members. Discussion and Conclusions: The results highlight the need for specialised staff and online spaces to communicate with media professionals and the rest of the population.

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Author Biographies

Antonio Castillo Esparcia, University of Málaga

Professor at the School of Communication Sciences of the University of Malaga. He teaches Theory and history of public relations, Communication in NGOs, and social movements. He holds a Bachelor’s and Doctoral degrees from the Autonomous University of Barcelona. Coordinator of the Master’s degree programme in “Strategic management and innovation in communication”, of the University of Malaga. Visiting Professor at European and American universities, where he has participated in conferences, postgraduate courses and professional study programmes. Director of the Department of Audiovisual Communication and Advertising of the University of Malaga. President of the Association of Public Relations Researchers. His most outstanding publications include: Evaluación en Comunicación Estratégica (“Evaluation in strategic communication”) (Ed. McGraw-Hill); Comunicación de Crisis 2.0 (“Crisis communication 2.0”) (Ed. Fragua); and Protocolo y Relaciones Públicas (“Protocol and Public Relations”) (Ed. Síntesis).

Paloma López Villafranca, University of Málaga

Paloma López Villafranca holds a Bachelor’s degree in Audiovisual Communication and Journalism from the University of Malaga and a Master’s degree in Strategic management and innovation in communication. She is undertaking a PhD in health communication.

She has participated in various national and international conferences, and published several book chapters and journal articles. She has been a professor at the Department of Audiovisual Communication and Advertising of the University of Malaga since 2009. She has been working as a teacher in public and private universities since 1999. She worked in the media from 1998 to 2009. She has worked as a journalist for the Prisa group, Recoletos, private enterprises and municipal bodies, as well as for RNE (in 1999).

Carmen Carretón Ballester, University of Alicante

Carmen Carretón Ballester holds a PhD degree from the University of Alicante, where she teaches public relations and internal communication in the Bachelor’s degree programme in advertising and public relations and the Doctoral Programme in Inequalities and Social Welfare, since 2001 and 2004, respectively. She has worked as university professor since 1998, and in different master’s degree programmes, since 2002, in the areas of internal and external public relations and health communication. Author and coordinator of various books on public relations. Director of the 1st and 2nd National Conferences on Public Relations, held at the University of Alicante in June 2006 and December 2008, respectively. Member of the Board of Directors of the Association of Public Relations Researchers. Director of the “Public relations and business communications” research group of the University of Alicante. Director of the 1st advanced course on strategic communication on SMEs for university students, organised by the University of Alicante.

Her teaching and research activities focus on public relations, internal communication management and relations with specific public and minorities. President of the Epilepsy Association of the Province of Alicante where she also designs and implements public relations strategies and carries out research in the field of communication

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