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

Authors

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

Keywords:

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

Abstract

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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Author Biographies

Jennifer García Carrizo, Universidad Rey Juan Carlos

Teacher and Researcher at Universidad Rey Juan Carlos. She holds an International PhD in Audiovisual Communication, Advertising, and Public Relations from Universidad Complutense de Madrid, where she received several awards for her academic excellence. She has held the Juan de la Cierva postdoctoral contract and is a member of the Ciberimaginario Research Group. She has been selected as a crew journalist for the Hypatia II analogue mission at the Mars Desert Research Station in 2025. She has received over 25 scholarships and 8 Awards for Excellence in Research and has completed residencies at prestigious European and Spanish universities.

Manuel Gertrudix, Universidad Rey Juan Carlos

Professor of Digital Communication and Multimedia at the Universidad Rey Juan Carlos, coordinator of the Ciberimaginario research group and co-editor of Icono14. Specialising in communication and digital education, he has led 12 research projects and participated in more than 25, with more than 150 publications. He was Vice-Rector for Quality, Ethics and Good Governance (2018-2021) and Academic Director of CIED (2013-2017) at the URJC. He has worked at the Ministry of Education and as a professor at various universities. He has completed research stays in the USA and Scotland and teaching stays in Argentina, Colombia and Brazil. He is the academic director of the Master's programme in Investigative Journalism, New Narratives, Data, Fact-Checking and Transparency at the URJC-El Confidencial.

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