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Infodemiology and Infoveillance of Multiple Sclerosis in Italy

DOI: 10.1155/2013/924029

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Abstract:

Multiple Sclerosis (MS) is a chronic debilitating disease of probable autoimmune inflammatory nature, whose aetiology is not fully understood, despite the many efforts and investigations. In this manuscript, we review the concept of “Multiple Sclerosis 2.0”, that is to say the Internet usage by MS patients, for seeking health and disease-related material for self-care and self-management purposes, and we introduce a Google Trends-based approach for monitoring MS-related Google queries and searches, called MS infodemiology and infoveillance. Google Trends has already proven to be reliable for infectious diseases monitoring, and here we extend its application and potentiality in the field of neurological disorders. 1. Introduction 1.1. Multiple Sclerosis 2.0 Multiple Sclerosis (MS) is a chronic debilitating disease of probable autoimmune inflammatory nature, whose aetiology is not fully understood, despite the many efforts and investigations carried out [1, 2]. Being a chronic disorder, MS has a tremendous psycho-social burden [3, 4], and recently the concept of a Web-based aid for MS patients has emerged, collecting MS-related information and at the same time trying to reduce the stressors, enhancing the self-management of the disease, facilitating the interactions between the patients and the medical team, and accurately reporting to the physician the patients’ symptoms after their online registration [5]. Gunther Eysenbach coined the terms “infodemiology” and “infoveillance”, describing a new emerging approach for public health [6, 7], based on large-scale monitoring and data mining, within the conceptual framework of e-health and health Web 2.0 [8, 9]. Even if with some limitations and concerns, the Internet and the medical informatics are paving the way for new directions in the field of the epidemiological research, indicating new trends and strategies [10]. In the shift from a paternalistic medicine (P0 model) to a patient-centered approach (P6 model, where the six Ps stay personalized, preventive, predictive, participatory, psycho cognitive, and public) [11–13], patients tend to use Internet as a source of relevant health-related information, even if not all properly validated or reliable, for health education, for finding suggestions, for coping strategies, and for self-managing their disease [14]. The Internet has blurred geographical boundaries and other barriers, making it available to lay people a wealth of medical material which was rather difficult to reach before that [15]. This material could help the patients in the process of decision

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