Public Media Coverage of Rare Diseases and Disorders: The Case of Spanish Public Broadcasting Corporation

Public Media Coverage of Rare Diseases and Disorders: The Case of Spanish Public Broadcasting Corporation

Yolanda Berdasco-Gancedo (Universidad a Distancia de Madrid, Spain)
Copyright: © 2020 |Pages: 21
DOI: 10.4018/978-1-7998-2088-8.ch005
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Rare diseases and disorders are, as the names suggest, a strange or unusual health condition, and so the coverage given by the media is not as extensive as it could be. However, researchers point out that this situation is changing little by little, and there is now more information about those who suffer from these conditions, and their experience. It is quite interesting to see how the public media, especially in the case of Spain, are making a great effort to give a voice and space to people affected by such diseases. In the case of public media, there are many other aspects to be considered. Firstly, the Spanish Broadcasting Corporation, Radio Televisión Española (RTVE) is not tied to private finance. Secondly, these channels are expected to be more independent and, subsequently, there may be no additional pressure to reach high audience share or obtain external funding from private media companies. This is especially interesting in the case of radio broadcasting, as it tends to be a medium with a high level of credibility, and closeness to the audience.
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Public media services are committed to improving people’s quality of life and serving the public interest by contributing to an informed society and having a great impact on individual’s daily living (e.g. voting, behaviour change, protesting) (Perse, Kubey, & Csikszentmihalyi, 1991; Wright, 1960). Indeed, a number of organizations, such as United Nations Educational, Scientific and Cultural Organization (UNESCO) have attempted to clarify the role of Public Service Broadcasting (PSB) and explain what would be expected from those media. One of the most obvious tasks of PSB is covering issues that are out of the scope of commercial media but meet the citizens’ general interest. RTVE follows United Nations Public Service Broadcasting (PSB) recommendations1 and as such, it aims to give a voice and a space to a general audience.

This chapter focuses on media coverage of rare diseases in Spanish public media. RTVE has a wide coverage of this area, using all the available channels: TV, radio, web services and social media profiles.

The investigation takes the form of a case-study in which RTVE broadcasts dealing with information about rare diseases are analysed, focusing on the content, data sources and the way information is included and presented.

The main aim of this chapter is to understand the way health-related information about rare diseases is covered in Spanish Public Broadcasting Corporation, namely, its conditions and treatments. Furthermore, it discusses the role of RTVE in satisfying Public Broadcasting Service (PBS) duties in spreading health-related information. Comparisons between public and commercial media are also made.

The author makes a distinction between programmes which deal with global and general information about these conditions, and those in which the individual situation of a person affected by a rare disease is presented. Likewise, the difference is noted between those programmes in which the disease and illness-related topics are the focus and those in which the interrelationships between different actors, such as doctors, organization spokespersons are in the spotlight.

The rationale for spreading health-related information about rare diseases is twofold: (a) underline that a rare disease exists; and (b) inform about the diagnostics and effects, in order to obtain some funding or research investment. Nonetheless, health-related journalism is still in need of accuracy, reliability and depth stories (Holtzman, et al., 2005; Smith, 2006).

By analysing information and communication in mass media, it is important to take into account polarization, frequency, or campaign initiatives, e.g. World Day of Rare Disease. Another significant aspect is also the relevancy to know whether they are using only traditional channels, i.e. television and radio to spread this information, or if they are including other platforms, such as a multimedia page ( and social media channels (i.e. Twitter, Facebook).

Finally, the way in which this information is presented also shows the strength of commitment of a chosen media source (in this case, RTVE) to people affected by rare diseases and disorders. Whether this content is presented only as part of a longer informative programme as a one-minute-piece, or is given more attention, with a documentary or with a more thorough treatment.

Key Terms in this Chapter

Radio Nacional de España (RNE): The Spanish public radio receives this name collectively. It is made up of several radio stations devoted to information (such as Radio 5 All News), music (such as Classical Radio) or culture in general (such as Radio 3).

Televisión Española (TVE): This is the name given to Spanish public television, collectively. It comprises several channels, among which are the first and second channel, 24-hour channel and international channel.

Documentary: A documentary is an audio-visual genre that can vary greatly from one medium to another. In principle, it is conceived to give a more complete view of a specific subject. Its duration and the manner in which its content is presented, with greater depth, a greater variety of actors, etc. make it the ideal format to raise awareness of unusual issues in traditional media.

Public Media/Public Broadcasting: Those media that have a vocation for public service and are therefore intended to cover gaps in programming that other media, for commercial purposes, cannot cover. In general, they have specific forms of funding that include public money and their return to society should respond to that investment.

Informative Programme: Content and informative slots are based on recent and relevant news for all citizens, or at least for the potential audience of the medium that produces them. In general, these programmes act as the backbone of the programming schedule.

Programme: Each of the spaces that are broadcast, on television or radio. They are collected in a programming schedule. It is important to know the length of these spaces, as well as the place they occupy in the schedule, to determine the importance that is given to each one.

Commercial Media: Media that do not rely, directly and only, on public funding. Those media have to get their money from private investors and commercials, but they do not have a public commitment. They do not pay so much attention to issues which are not attractive for many people, as they need high audience levels to obtain more commercials and finance themselves.

Radio Televisión Española (RTVE): Public audio-visual media corporation in Spain. It includes several television channels, radio stations and a platform for digital and interactive media.

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