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.
Purpose: The purpose of the presented study was to develop a set of recommendations for decision-makers (policymakers and public managers) and public employees to enhance the effectiveness and ...efficiency of organisational elements in the adoption of artificial intelligence (AI) in public institutions. Design/methodology/approach: Utilising a systematic literature review following the PRISMA protocol, the study examines the organisational enablers of AI adoption in public institutions. Comprehensive search queries in the Scopus database identified relevant literature focusing on the intersection of AI technologies and various organisational elements. The analysis was facilitated by NVivo 12, enabling a structured examination of key organisational facets for people, culture, structure, processes, and technology within public institutions. Findings: Previous studies on AI adoption in public institutions identified numerous enablers of AI adoption associated with organisational elements like people/employees, structure, culture, technology, and processes. Several surveys and case studies stress the importance of concentrating on the introduction or transformation of these organisational elements prior to or concurrently with the adoption of AI. Academic contribution to the field: By applying a systematic literature review protocol, the study represents the first holistic and systematic review of specific organisational elements that can serve as enablers of AI adoption in public institutions. Research limitations/implications: This systematic literature review was subject to several limitations. Firstly, the division of AI literature between natural and social sciences, with the former focusing on technical aspects and the latter on broader organisational themes, may have resulted in an incomplete depiction of the intersection of AI and organisational change. Secondly, despite the broad search queries, inherent limitations of keyword-based searches may have excluded some relevant studies. Thirdly, considering the rapid evolution of AI technology, our review may not fully encapsulate the very latest developments in the field as it covers literature published until May 2023. Finally, the interpretation and coding of literature, despite the use of NVivo 12, involved subjective elements that could affect the study’s outcomes. Practical implications: Drawing from experiences in the private sector, public institutions are increasingly adopting AI technologies across various subsectors such as public finance (taxation), research, healthcare, law enforcement, defence, education. This requires a transformation in both hard (structure, processes etc.) and soft aspects (people, organisational culture etc.). Therefore, the enablers identified in the study can serve as guidelines for decision-makers and implementers of AI at all levels of public institutions. Social implications: If adopted effectively and efficiently and used professionally and ethically, the use of AI in public institutions can bring many benefits to society, such as transparency, justice, cost and time efficiency, high quality services, and improved collaboration between different stakeholders in society. Originality/significance/value: Our study makes a distinct contribution by shifting the focus from technological barriers to organisational enablers of AI adoption in public institutions. It bridges a critical gap in the literature by integrating both technical and social science perspectives, providing valuable insights for theory and practice in the fields of organisation and management.
Purpose: The purpose of the presented study was to develop a set of recommendations for decision-makers (policymakers and public managers) and public employees to enhance the effectiveness and ...efficiency of organisational elements in the adoption of artificial intelligence (Al) in public institutions. Design/methodology/approach: Utilising a systematic literature review following the PRISMA protocol, the study examines the organisational enablers of Al adoption in public institutions. Comprehensive search queries in the Scopus database identified relevant literature focusing on the intersection of Al technologies and various organisational elements. The analysis was facilitated by NVivo 12, enabling a structured examination of key organisational facets for people, culture, structure, processes, and technology within public institutions. Findings: Previous studies on Al adoption in public institutions identified numerous enablers of Al adoption associated with organisational elements like people/employees, structure, culture, technology, and processes. Several surveys and case studies stress the importance of concentrating on the introduction or transformation of these organisational elements prior to or concurrently with the adoption of Al. Academic contribution to the field: By applying a systematic literature review protocol, the study represents the first holistic and systematic review of specific organisational elements that can serve as enablers of Al adoption in public institutions. Research limitations/implications: This systematic literature review was subject to several limitations. Firstly, the division of Al literature between natural and social sciences, with the former focusing on technical aspects and the latter on broader organisational themes, may have resulted in an incomplete depiction of the intersection of Al and organisational change. Secondly, despite the broad search queries, inherent limitations of keyword-based searches may have excluded some relevant studies. Thirdly, considering the rapid evolution of Al technology, our review may not fully encapsulate the very latest developments in the field as it covers literature published until May 2023. Finally, the interpretation and coding of literature, despite the use of NVivo 12, involved subjective elements that could affect the study's outcomes. Practical implications: Drawing from experiences in the private sector, public institutions are increasingly adopting Al technologies across various subsectors such as public finance (taxation), research, healthcare, law enforcement, defence, education. This requires a transformation in both hard (structure, processes etc.) and soft aspects (people, organisational culture etc.). Therefore, the enablers identified in the study can serve as guidelines for decision-makers and implementers of Al at all levels of public institutions. Social implications: If adopted effectively and efficiently and used professionally and ethically, the use of Al in public institutions can bring many benefits to society, such as transparency, justice, cost and time efficiency, high quality services, and improved collaboration between different stakeholders in society. Originality/significance/value: Our study makes a distinct contribution by shifting the focus from technological barriers to organisational enablers of Al adoption in public institutions. It bridges a critical gap in the literature by integrating both technical and social science perspectives, providing valuable insights for theory and practice in the fields of organisation and management.
Public administration and governance must adapt to the changing socio-economic environment, improving quality, process efficiency, and collaboration. Hence, public administration and public ...governance models have been significantly modified multiple times, resulting in differences in public governance practices. This paper examines different public governance models principles in Slovene and Japanese public administration. It quantifies elements based on the models' principles and applies them to an empirical case using a survey of 55 Slovene and 135 Japanese public managers. The independent samples t-test examines the differences in characteristics of public governance practices between state administration and local government in Slovenia and Japan. The results show that state administration institutions in both countries are strongly characterised by the (Neo) Weberian models principles, while Slovenia's local government leans towards Digital-era governance (DEG) and good governance (GG) principles. Japan's state and local administrations show equal presence of New public management (NPM), DEG, and GG models. The study aims to bridge a research gap by providing new findings on how different public governance models can be found at various Slovene and Japanese public administration levels and offers insights for public managers and policymakers for future public administration reforms.
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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