RESUMEN
In July 2023, the Center of Excellence in Respiratory Pathogens organized a two-day workshop on infectious diseases modelling and the lessons learnt from the Covid-19 pandemic. This report summarizes the rich discussions that occurred during the workshop. The workshop participants discussed multisource data integration and highlighted the benefits of combining traditional surveillance with more novel data sources like mobility data, social media, and wastewater monitoring. Significant advancements were noted in the development of predictive models, with examples from various countries showcasing the use of machine learning and artificial intelligence in detecting and monitoring disease trends. The role of open collaboration between various stakeholders in modelling was stressed, advocating for the continuation of such partnerships beyond the pandemic. A major gap identified was the absence of a common international framework for data sharing, which is crucial for global pandemic preparedness. Overall, the workshop underscored the need for robust, adaptable modelling frameworks and the integration of different data sources and collaboration across sectors, as key elements in enhancing future pandemic response and preparedness.
RESUMEN
BACKGROUND: Dermatoses represent a significant burden. Patients and their caregivers can turn to social media and digital communities to exchange with each other. These public exchanges constitute real-life data that can be analysed to better understand the patients' feelings and expectations, and the daily difficulties encountered. OBJECTIVE: An infodemiologic study of public testimonies of patients and caregivers related to five dermatoses: eczema, rosacea, vitiligo, acne and psoriasis, over a 3-year time frame (September 2018 to September 2021) in France. To identify main topics of discussion, encountered difficulties and unmet medical needs. METHODS: Data extraction was performed based on a list of pertinent keywords. Web-users' profiles were determined by a specifically trained machine learning algorithm. Encountered difficulties were identified by manual annotation based on a standardized search grid. Co-occurrence analysis of difficulties allowed contextualization of challenges and unmet needs for each dermatosis. RESULTS: A total of 20,282 messages coming from 16,800 web users was extracted. The main topics of discussion were 'Impact on self- image and self-confidence' (23.6%), 'Generic discussion about therapeutics' (23.3%) and 'Burden of others' gaze' (12.8%). The top three mentioned difficulties for the five targeted dermatoses were similar and focused on 'Fear of/and management of symptoms', 'Impact on/and mood management' and 'Damaged self-image'. CONCLUSION: This infodemiologic study highlighted the real-life management of five skin diseases by patients and their caregivers, who turned to social networks to openly express their suffering and seek solutions. The joined analysis of the five diseases enabled a common comprehension of what it is to live with a skin disease, from a patient-centric point of view. The specific analysis of each patient group objectified specific challenges, and main unmet medical needs.
Asunto(s)
Emociones , Enfermedades de la Piel , Medios de Comunicación Sociales , Humanos , Francia , Enfermedades de la Piel/psicología , Enfermedades de la Piel/terapia , Femenino , Masculino , Acné Vulgar/psicología , Acné Vulgar/complicaciones , Rosácea/psicología , Rosácea/terapia , Psoriasis/psicología , Eccema/psicología , Eccema/terapia , Vitíligo/psicología , Vitíligo/terapia , AdultoRESUMEN
The increasing role of digital technology, social media, the wide range of channels and the volume of information, the role of medicine as a societal subject, public information that is insufficient and poorly suited to situations of uncertainty are all observations which led to the theme of this round table. After discussing the definition of disinformation, which is not limited to fake news, and talking about contributors who misinform, whether intentionally or not, the participants of this round table made nine recommendations (R) to combat disinformation about health products: create a collaborative platform, information/training on health products, a platform with five major characteristics, namely accessibility, flexibility, objectivity, transparency and independence, as well as media suited to the different targets (R1); promote basic knowledge on health products: education/training to restore the particularly poor image of medication, and teach the public how to use basic concepts appropriately (R2); improve communication to the public based on the observation that information is the main weapon against misinformation and entails, in particular, coordinating communication from the different institutions to make public information more audible, making institutional messages clearer, ensuring they are more factual and prioritising them (R3); know how to communicate using the correct codes and tools (R4), because, to be understood, the substance and the form are inseparable; develop research on communication in the field of health products (R5); acquire tools to identify and regulate as soon as possible (R6); keep check of content by developing critical thinking (R7); define quality criteria for information sources (R8); identify, assess and reference initiatives for the public that could be placed on the platform (R9).