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.
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.
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.
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 the development of national rare disease registries. However, ensuring effective healthcare delivery in this intricate field is critically dependent on the harmonization of digital solutions with other systemic factors and the adaptation of the rare disease ecosystem to the patients' needs and the specifics of the healthcare environment.
This research advances the field of digital government by developing and empirically validating a model for measuring the digital state of public administration, with a specific focus on Slovenia. ...Moving beyond traditional digital maturity models, our study introduces a holistic framework that integrates elements of technology, process, structure, people and organisational culture, enriched by dimensions of digital principles, good governance, and external environmental factors. This framework is grounded in an adaptation of Leavitt’s diamond model, tailored to capture the nuances of digitalisation in public administration. The empirical validation is conducted through a comprehensive questionnaire administered to Slovenian public administration organisations at both local and state levels. The results provide a nuanced understanding of the current digital state that extends beyond technological aspects, including process optimisation, organisational structure, people elements and culture dynamics, and insights into internal and external barriers to digitalisation as well as principles of good governance and digitalisation. The study’s results show that ministries in Slovenia generally possess a more advanced digital infrastructure than municipalities, particularly in various aspects of ICT development and integration. While Slovenia aspires to align with the EU digital strategy, it faces various challenges, particularly at the municipal level, in achieving coherent development of digital skills and policy implementation. The comprehensive approach allows for a more informed evaluation of digital transformation efforts, offering insights into areas of strength and opportunities for further development. The findings have significant implications for policymakers and stakeholders, highlighting critical areas for targeted improvement and strategic planning in the digitalisation of public administration.
Public administration and public governance play a crucial role in society today by ensuring that social needs are met. Due to the constantly changing environment, public governance models have ...transformed many times, creating differences in public governance practices among public administration institutions, with combinations of contradictory structures and principles that coexist. Accordingly, this paper aims to provide an overview of different public governance models, extract quantifiable elements based on models' principles and examine the extent of layering of different governance models at different levels of public administration in the specific case of the Slovenian administration. Thus, the main focus is on identifying the differences in characteristics of public governance practices between state administration and local self-government. The results show state administration institutions are more strongly characterised by the Neo-Weberian model's principles. In contrast, local self-government institutions are more oriented to managerial public governance and Digital-Era Governance practices. Public managers may regard the results as additional resources for democratic and efficient governing. At the same time, they may provide policymakers with in-depth insights to consider while determining the trajectories of future public administration reforms.
Rare diseases (RDs), with distinctive and complex features, pose a serious public health concern and represent a considerable challenge for the Slovenian healthcare system. One of the potential ...approaches to tackling this problem and treating patients with RDs in a quality and effective manner is to form an RD ecosystem. This represents a functional environment that integrates all stakeholders, procedures, and relationships required for the coordinated and effective treatment of patients. This paper explores the current situation in the field of RDs, especially in light of the proposed ecosystemic arrangement, and provides an outline for the design of an RD ecosystem in Slovenia. The research applies a case-study design, where focus groups are used to collect evidence from the field, assess the state of affairs, and generate ideas. Structured focus group discussions were conducted with preeminent experts affiliated with the leading institutions in the field of RDs in Slovenia. Analyses and interpretations of the obtained data were carried out by means of conventional content analysis. Setting up an RD ecosystem in Slovenia would lead to significant benefits for patients, as it could promote the coordination of healthcare treatment and facilitate extensive monitoring of the treatment parameters and outcomes. A well-organized RD ecosystem could garner considerable systemic benefits for evidence-informed policymaking, a better utilization of resources, and technological innovation. Delivering quality healthcare in this complex field is largely reliant on the effective integration and collaboration of all entities within the RD ecosystem, the alignment of related systemic factors, and the direction of healthcare services to support the needs and well-being of patients with RDs.
Recently, a patient-reported experience measure (PREM) was developed in Slovenia to assess patients' experiences with outpatient specialist healthcare clinics. The aim of this study was to evaluate ...the psychometric properties (including factor structure, reliability, convergent validity, and response distribution) of the questionnaire.
The sample consisted of 8,406 adult participants treated in 171 specialist clinics from different medical fields. Participants voluntarily and anonymously responded to either the paper or online survey.
Descriptive statistics show meaningful response patterns with a general tendency towards favourable assessments. The psychometric analyses of the scales evaluating doctor's and nurses' work, respectively, generally showed a good fit of the unidimensional factor model as well as the Rasch model, high factor loadings and very good to satisfactory reliability. The Rasch scaling showed that these scales were most informative for patients with relatively unfavourable experience ratings.
The results are similar to those found in previous evaluations of PREMs in other countries. Given its good psychometric properties, the Slovenian PREM can be recommended for healthcare evaluations in Slovenia and as a model for the development of similar PREMs in other countries.
The COVID-19 pandemic has significantly reshaped administrative relations and put emphasis on the digital transformation of public administration that is urgently needed to support a sustainable ...recovery from the pandemic crisis and future sustainable development in the post-pandemic era. This paper presents a comparative study on the ways the first wave of the COVID-19 pandemic impacted general administrative authorities on the local level with respect to various aspects of their functioning and digitalization in five European countries. With a sample of 926 respondents from the Czech Republic, Germany, Poland, Romania, and Slovenia, the study shows that the pandemic-imposed changes are very similar in these countries. The results reveal that, except for Germany, the biggest problems of pandemic-related regulations are their obscurity. For all countries under study, parties to the procedures are shown to be the main driver of digitalization and not the public administration itself, generally lagging behind in this sense. Nevertheless, the pandemic has also created several potential opportunities, whereby public managers, especially in Germany, have acknowledged the importance of digitalization right after the protection of health, as confirmed by the wider use of ICT equipment, particularly in Germany and the Czech Republic. Moreover, Germany and Romania exhibit the greatest potential to accelerate digitalization. Finally, the critical factors influencing accelerated digitalization after the pandemic are also identified. The paper’s evidence-based findings could prove useful while formulating recommendations for the sustainable practices of public administrations during this and any future pandemic crisis.
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