Εφαρμογές Πληροφορικής Υγείας & Τουρισμός. Εξατομικευμένη πληροφόρηση για ασθενείς με σπάνια νοσήματα.

Abstract

Objective: This paper examines and discusses the role of health IT applications in terms of facilitating patients suffering from a rare disease, regarding needs or difficulties they face after diagnosis. In particular, this work focuses on the development of information technologies and tools that can meet the needs of patients with rare neuromuscular and neurodegenerative diseases when they wish to move to another place for tourism and/or therapeutic purposes. Purpose: There is a research gap in this field, both in Greek and international literature. The purpose of this paper is to assist as possible in the filling of this research gap, studying the needs of patients with rare diseases, in particular as regards exploration and use of specialized tourism and therapeutic services, exploring at the same time the ways and perspectives of meeting these needs in Greece with the use of information and communication technologies. Methodology: Methodologically, a systematic review of the literature was conducted through online databases (Pubmed, Orphanet & Orphadata, Medscape, Elsevier, Taylor & Francis Online, SpringerLink, Google Scholar, Eurordis, European Reference Networks). It is considered appropriate to conduct primary research in the future, which was impossible under the strict time constraints of this study. Outcomes-proposal: Rare diseases have a cumulatively high global impact. In addition to medical and pharmaceutical services, patients suffering from such diseases need complementary services that can improve their quality of life. Tourism and recreation, especially when combined with therapeutic intervention features such as rehabilitation and pain relief, can have multiple benefits for the quality of life of patients with rare diseases. The proposal of this work is the development of information technologies and tools of personalized information (web and mobile application), which can respond to the tourist and therapeutic needs of patients with rare diseases, providing information and guidance for access to specialized services. The development of the applications (web and mobile), with consequent utilization of freely available data using interoperability, can bring significant benefits: to the quality of life of patients living with rare diseases and to the flourishing of a new health tourism sector in Greece.