Digital Media in Rare Diseases or “Knowledge Is Power”: The Role of EURORDIS in Creating Awareness and Diagnosing Rare Diseases

Digital Media in Rare Diseases or “Knowledge Is Power”: The Role of EURORDIS in Creating Awareness and Diagnosing Rare Diseases

Célia Felícia Belim Rodrigues (Instituto Superior de Ciências Sociais e Políticas, Universidade de Lisboa, Portugal)
Copyright: © 2020 |Pages: 25
DOI: 10.4018/978-1-7998-2088-8.ch004

Abstract

This chapter focuses on the use of digital media by EURORDIS-Rare Diseases Europe and is specifically committed to understand its contribution to the awareness and diagnosis of rare diseases. To perceive the use of digital media and role in creating awareness of rare diseases, the contents of its website and Facebook page were analyzed. In specific, a promotional video of EURORDIS and a collection of 12 videographically documented stories from 2018 and 2019. The results show the use of various types of content and inherently practices, such as information, clarification, personalization, support, appeal, and empowerment, and of several rhetorical resources. In the dimension of pathos, the author finds elements that motivate awareness and inspire the receiver. Some elements of the logos used are credibility of sender(ethos), testimony (ethos), description of disease and identification of symptoms, exemplification and personalization, factual data, statistic data, and the use of metaphors and repetition.
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Background

Social media, used within health care contexts for communication purposes, is increasing and becoming more acceptable (Burke-Garcia & Scally, 2014; Moorhead, 2017). Specifically, these digital tools are likely to enable: (a) Improved interactions with others; (b) More available, shared, and tailored information; (c) Increased accessibility and widening access; and (d) Increased peer/social/emotional support. These are some of numerous benefits of social media for healthcare communication (Moorhead, 2017).

Key Terms in this Chapter

Inlinks: Hyperlinks directed to own websites.

Logos: Based on evidence, true or probable arguments and logically extracted inferences capable of making the audience adhere to the thesis put forward (reason).

Dominant-Hegemonic Position: When the receiver takes the connoted meaning from the media content, full and straight, and decodes the message in terms of the reference code in which it has been encoded. It can be said that the receiver is operating inside the dominant code, being this case an ideal-typical case of “perfectly transparent communication.”

Awareness: Ability to directly know and perceive, to feel, or to be cognizant of events.

Online Press Room: A section of the website for media’s use, containing all news releases (archived by date, typically), photos, videos, brochures, catalogs.

EURORDIS: A non-profit alliance of 837 rare disease patient organizations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

Pathos: Those derived from emotion aroused in the public (emotion).

Ethos: Credibility derived from the character of the communicator.

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