Las asociaciones de enfermedades raras: Estructura de sus redes e identificación de los líderes de opinión mediante la técnica del análisis de redes sociales

Dasilva, Jesús Pérez; Diez, María Teresa Santos; Ayerdi, Koldobika Meso

doi:10.4185/rlcs-2021-1498

Cited by 5 publications

(1 citation statement)

References 27 publications

(27 reference statements)

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“…For example, there should be increased healthcare research resources in order to achieve more accurate, effective diagnosis and treatment [11]. In the social setting, patient support groups should be more widespread to encourage an activist, welfare-based approach to those suffering from these diseases and their families [15]. In education, inclusion (both educational and social) should be promoted by use of individualized education that addresses the distinct potential and characteristics of those suffering from these diseases [16].…”

Section: Introductionmentioning

confidence: 99%

Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers

Perales

Palomares-Ruiz

Ordóñez-García

et al. 2022

IJERPH

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Background: Education plays a fundamental role in everyone’s wellbeing. That means it is essential to provide quality inclusive activities to ensure equity and equality of opportunity in order to shape a cohesive, democratic, healthy society. Methods: In this study we focus on how inclusive educational practice addresses students with rare diseases, looking at teachers’ knowledge and opinions in this regard. A questionnaire was administered to 574 teachers who taught in various stages of non-university education to determine their knowledge and opinions about different dimensions: conceptualization, legislation, intervention, and diagnosis. Results: The results suggested various ideas for improvement in pursuit of positive, real inclusion, such as the need to improve teachers’ knowledge and understanding of these students’ characteristics and potential, with widespread specific training being urgently needed. Conclusions: in summary, students’ rights to education without discrimination is a basic premise of an educational system, leading to the need for a complete educational response that allows each student to develop as a person.

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Section: Introductionmentioning

confidence: 99%

Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers

Perales

Palomares-Ruiz

Ordóñez-García

et al. 2022

IJERPH

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Exploring rare disease realities: a systematic literature review on harnessing social media patient-generated data (Preprint)

Le Priol,

Gedik,

Mebarki

et al. 2023

Preprint

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BACKGROUND Rare diseases affect roughly 400 million people world-wide, and 30 million in Europe. Intangible costs and personal aspects for patients and their families are rarely accounted for, as most studies focus on easy-to-measure metrics. On the other hand, social media play an important role for these people who can easily feel isolated and seek both support and advice online. OBJECTIVE We aim to examine in the peer-reviewed academic literature how social media has been used to generate new knowledge, and the types of research questions that have been answered through social data mining. We explore what types of methods, data sources, and data types are used. METHODS We reviewed studies based on user-generated data, focusing on rare diseases, and published prior to May 2023. For included publications, a list of pertinent variables was established to cover data sources, data processing, and objectives. These variables were later on analysed quantitatively and qualitatively. RESULTS Eighty-seven studies were included. The vast majority of publications (94.3%) focused on one rare disease or on a family of rare diseases. Overall, only less than a hundred rare diseases were studied in the included publications. Moreover, 93.1% of the studies analysed contents in English. Surprisingly, automated methods were used in only seven studies, all published after 2020. These publications’ mean number of posts studied is 33,201 (compared to 1,405 for publications analysing the posts manually). Among these publications, three had a temporal range of five years or more, accounting for half of the publications with a temporal range of five years or more (the majority of publications had a temporal range of less than two years). Among the seven publications using AI methods, the two main AI-assisted tasks were sentiment analysis and topic identification. CONCLUSIONS This work allowed us to grasp what the reality of using user-generated social media data for rare disease research was in 2023. The opportunities of current AI research on NLP are still underexploited in this very specific field, resulting in an under exploitation of online data. Contrasting with the high expectancies of the rare disease research community, this review shows that social media based studies in this field are still at an early stage, with only a tiny portion of rare diseases studied, with only a few languages studied also, and mainly with only very few studies exploiting current NLP progress to extract knowledge from social media data.

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Futbolistas en Twitter. Una plataforma para la autopromoción

Ayerdi

Dasilva

Galdospín

2021

RCom

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La aparición de las redes sociales ha proporcionado a los futbolistas un medio novedoso y muy eficaz para llegar a sus seguidores e interactuar con ellos. Este nuevo giro en las relaciones entre jugadores y aficionados ha suscitado un reciente debate (Cleland, 2009) sobre los intentos de estos deportistas de conectarse con el público y potenciar sus imágenes de marca a través de Twitter (Hutchins, 2011). La presente investigación pretende analizar los aspectos del comportamiento en Twitter de los cinco futbolistas que compiten en las principales ligas europeas con mayor número de seguidores en la red de microblogging. Se trata de ver cómo se relacionan estos deportistas con sus aficionados, con quienes hablan y de qué hablan, con el fin de determinar la forma en que estas personas utilizan Twitter para crear marcas personales y forjar conexiones entre ellos y los clubes para los que juegan y los aficionados. El análisis de contenido se utilizó para detectar los patrones de difusión de los mensajes e identificar a los principales protagonistas de las conversaciones examinadas. También se analizaron las redes semánticas y el uso de hashtag para encontrar correlaciones significativas entre las palabras. Para esta parte del análisis se utilizó NodeXL, programa de software de código abierto más utilizado en el análisis de redes sociales (Hansen, Shneiderman & Smith, 2010). Uno de los principales usos que hacen de Twitter está vinculado a la autopromoción. Además, los perfiles de estos futbolistas suelen apoyar iniciativas y campañas solidarias.

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Las asociaciones de enfermedades raras: Estructura de sus redes e identificación de los líderes de opinión mediante la técnica del análisis de redes sociales

Cited by 5 publications

References 27 publications

Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers

Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers

Exploring rare disease realities: a systematic literature review on harnessing social media patient-generated data (Preprint)

Futbolistas en Twitter. Una plataforma para la autopromoción

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