Citizen Science and Scientific Communication: What, When, Where and How to inform and Who should communicate about Long COVID

Jennifer García Carrizo; Manuel Gertrudix

doi:10.35669/rcys.2025.15.e364

Autores/as

Jennifer García Carrizo Universidad Rey Juan Carlos https://orcid.org/0000-0002-0264-1931
Manuel Gertrudix Universidad Rey Juan Carlos https://orcid.org/0000-0002-5869-3116

DOI:

https://doi.org/10.35669/rcys.2025.15.e364

Palabras clave:

Long COVID, Scientific Communication, Citizen Science, information, recommendations

Resumen

Introduction: The lack of adequate health information, especially during crises such as COVID-19, creates distrust and misinformation, which negatively impacts public health and medical care. Long COVID patients face scepticism, highlighting the urgency of improved communication and research to support their recovery. Methodology: Structured interviews with 42 Long COVID patients, 10 healthcare professionals, and 11 health communication specialists to obtain a comprehensive picture of the situation and develop recommendations. Results: The need for institutional recognition of Long COVID is emphasized. The creation of official digital platforms and increased awareness among primary care physicians is suggested. The importance of collaboration between government bodies, associations, patient groups, and communication experts is emphasised to provide multidisciplinary and transparent information, considering the evolution of scientific research. Discussion: Improving the communication and recognition of Long COVID can reduce misinformation and distrust. Collaboration between actors is key to ensuring effective and accurate information dissemination. Scientific communication actions, such as conferences and reports, are significant steps to raise awareness among society and health professionals about Long COVID. Conclusions: It is crucial to optimize the dissemination of information about Long COVID via official digital platforms and increase medical awareness. Multidisciplinary collaboration and scientific communication activities are essential to support patients and improve public health.

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Biografía del autor/a

Jennifer García Carrizo, Universidad Rey Juan Carlos

Profesora e Investigadora en la Universidad Rey Juan Carlos. Doctora Internacional en Comunicación Audiovisual, Publicidad y Relaciones Públicas por la Universidad Complutense de Madrid, donde recibió varios premios por su excelencia académica. Ha disfrutado del contrato postdoctoral Juan de la Cierva y es miembro del Grupo de Investigación Ciberimaginario. Ha sido seleccionada como tripulante de la misión análoga Hypatia II en la Estación de Investigación del Desierto de Marte en 2025. Ha recibido más de 25 becas y 8 Premios a la Excelencia Investigadora y ha realizado estancias en prestigiosas universidades europeas y españolas.

Manuel Gertrudix, Universidad Rey Juan Carlos

Catedrático de Comunicación Digital y Multimedia de la Universidad Rey Juan Carlos, coordinador del grupo de investigación Ciberimaginario y coeditor de Icono14. Especializado en comunicación y educación digital, ha dirigido 12 proyectos de investigación y participado en más de 25, con más de 150 publicaciones. Ha sido Vicerrector de Calidad, Ética y Buen Gobierno (2018-2021) y Director Académico del CIED (2013-2017) en la URJC. Ha trabajado en el Ministerio de Educación y como profesor en diversas universidades. Ha realizado estancias de investigación en EEUU y Escocia y estancias docentes en Argentina, Colombia y Brasil. Es director académico del Máster en Periodismo de Investigación, Nuevas Narrativas, Datos, Fact-Checking y Transparencia de la URJC-El Confidencial.

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