Background According to rough estimates, there are approximately 150,000 rare disease patients in Slovenia (out of a total population of 2 million). Despite the absence of accurate epidemiological data on their status, these figures reveal the great importance of this area for the Slovenian healthcare system. Consistent monitoring in the field of rare diseases facilitates evidence-informed healthcare policies, comprehensive observation of rare disease patients, and consequently serves increasingly demanding medical and statistical needs. This paper initially explores the current situation concerning rare diseases and identifies related challenges for the planned development of a national rare disease registry in Slovenia. Based on the research findings, the paper outlines the construction of the pilot rare disease registry and conceptualizes the establishment of a rare disease ecosystem in Slovenia. Methods The research is based on a case study design, where focus group sessions were used as the main data collection technique. Structured discussions were conducted with 24 eminent experts affiliated with the leading institutions in the field of rare diseases in Slovenia. Analysis and interpretations of the data obtained were carried by means of conventional content analysis. A subsequent course of action for developing the pilot rare disease registry and conceptualizing the rare disease ecosystem was formulated in collaboration with the experts participating in the focus groups. Results The research results indicate that the effective development of the national rare disease registry, followed by the establishment of the rare disease ecosystem in Slovenia, requires a broad approach that entails a whole series of systemic changes and considerations. Moreover, well-orchestrated and well-funded efforts to achieve this goal should involve the coordinated action of all stakeholders, including the amendment of the regulatory framework, quality design, and enactment of a general rare disease policy, as well as the alignment of medical, organizational, and technological aspects in accordance with the long-term public healthcare objectives. Conclusions The establishment of a rare disease ecosystem in Slovenia and probably elsewhere, including a national rare disease registry, would represent an important improvement for patients, as it could significantly contribute to more coordinated healthcare treatment and enable comprehensive monitoring of the treatment process and results. A well-organized rare disease ecosystem could bring considerable benefits to healthcare system managers by providing a useful platform for estimating the required resources, evidence-informed policymaking, technological innovation, and organizational restructuring. This research provides valuable insight into the background of the issues that many countries face in the field of rare diseases, and ultimately provides practical recommendations for...
Decision-makers from the Slovenian healthcare system have generally failed to look beyond the information and communication technology, while trying to implement highly intricate and expensive eHealth project. Accordingly, functional integration of planned information and communication technology solutions with various business aspects of the healthcare system has remained largely ignored, while the existing and obsolete business model of the Slovenian healthcare system continues to operate significantly limited and unadapted to the increasing and ubiquitous penetration of information and communication technologies into the healthcare environment. This article explores the characteristics and structure of the business model concept, identifies the impending effects of informatization on the healthcare business model, and finally provides a framework for information and communication technology-induced transformation of the existing healthcare business model in Slovenia. The research is based on the case study evidence and structured interviews with the distinguished experts from the cross-sectional areas of the healthcare system strongly related to the business model concept. Research results imply that effective transformation of the healthcare business model should consider various factors from the healthcare ecosystem, including a redefinition of the functions and relationships of and between the main actors of the business model, and the reconfiguration of the organizational, structural, and technological elements in line with the long-term business objectives.
Implementation of eHealth is one of the key long-term goals of the Slovenian public sector. The main objective of eHealth is the construction of a comprehensive health information system (IS) and the connection of a widespread network of stakeholders within the healthcare sector. The article presents a review of the eHealth project in Slovenia and provides a comparative analysis of eHealth development in Slovenia, Austria and Denmark. Focusing on the situation in Slovenia, the article identifies the main deficiencies in the current state of eHealth implementation, maps a set of general success factors in the field and suggests guidelines for the effective development and implementation of eHealth projects.
Patient Portal represents a connecting service for the Slovenian eHealth solutions and enables patients with effective and secure access to their medical documentation. Ever since its national roll-out in 2017 the number of visits of the Patient Portal has been constantly growing, however, during the time of Covid-19, the number of visits has increased dramatically to reach almost 1.9 million visits in 2020. This article initially presents the functionalities of the Patient Portal and the dynamics of the visits to the Patient Portal in the time of Covid-19. In the second part, the article outlines the most significant benefits to healthcare stakeholders provided by the Patient Portal in the period of Covid-19. The study applies a focus group methodology. Structured focus group discussions were carried out with prominent experts, who are in charge of the Patient Portal and other national eHealth solutions in Slovenia. Research results indicate that the Patient Portal has attracted enormous interest and has become one of the essential public health tools empowering patients and supporting the enactment of public health policies and measures during the Covid-19 crisis.
Introduction: With the expansion of available Information and Communication Technology (ICT) services, a plethora of data sources provide structured and unstructured data used to detect certain health conditions or indicators of disease. Data is spread across various settings, stored and managed in different systems. Due to the lack of technology interoperability and the large amounts of health-related data, data exploitation has not reached its full potential yet. Aim: The aim of the CrowdHEALTH approach, is to introduce a new paradigm of Holistic Health Records (HHRs) that include all health determinants defining health status by using big data management mechanisms. Methods: HHRs are transformed into HHRs clusters capturing the clinical, social and human context with the aim to benefit from the collective knowledge. The presented approach integrates big data technologies, providing Data as a Service (DaaS) to healthcare professionals and policy makers towards a "health in all policies" approach. A toolkit, on top of the DaaS, providing mechanisms for causal and risk analysis, and for the compilation of predictions is developed. Results: CrowdHEALTH platform is based on three main pillars: Data & structures, Health analytics, and Policies. Conclusions: A holistic approach for capturing all health determinants in the proposed HHRs, while creating clusters of them to exploit collective knowledge with the aim of the provision of insight for different population segments according to different factors (e.g. location, occupation, medication status, emerging risks, etc) was presented. The aforementioned approach is under evaluation through different scenarios with heterogeneous data from multiple sources.
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