Failures and fallacies of eHealth initiatives: Are we finally able to overcome the underlying theoretical and practical orthodoxies?

The growing and ubiquitous digitalization trends embodied in eHealth initiatives have led to the widespread adoption of digital solutions in the healthcare sector. These initiatives have been heralded as a potent transformative force aiming to improve healthcare delivery, enhance patient outcomes and increase the efficiency of healthcare systems. However, despite the significant potential and possibilities offered by eHealth initiatives, the article highlights the importance of critically examining their implications and cautions against the misconception that technology alone can solve complex public health concerns and healthcare challenges. It emphasizes the need to critically consider the sociocultural context, education and training, organizational and institutional aspects, regulatory frameworks, user involvement and other important factors when implementing eHealth initiatives. Disregarding these crucial elements can render eHealth initiatives inefficient or even counterproductive. In view of that, the article identifies failures and fallacies that can hinder the success of eHealth initiatives and highlights areas where they often fall short of meeting rising and unjustified expectations. To address these challenges, the article recommends a more realistic and evidence-based approach to planning and implementing eHealth initiatives. It calls for consistent research agendas, appropriate evaluation methodologies and strategic orientations within eHealth initiatives. By adopting this approach, eHealth initiatives can contribute to the achievement of societal goals and the realization of the key health priorities and development imperatives of healthcare systems on a global scale.

Health and Care Data: Approaches to data linkage for evidence-informed policy.

An indispensable prerequisite for answering research questions in health services research is the availability and accessibility of comprehensive, high-quality data. It can be assumed that health services research in the coming years will be increasingly based on data linkage, i.e., the linking, or connecting, of several data sources based on suitable common key variables. A range of approaches to data collection, storage, linkage and availability exists across countries, particularly for secondary research purposes (i.e., the use of data initially collected for other purposes), such as health systems research. The main goal of this review is to develop an overview of, and gain insights into, current approaches to linking data sources in the context of health services research, with the view to inform policy, based on existing practices in high-income countries in Europe and beyond. In doing so, another objective is to provide lessons for countries looking for possible or alternative approaches to data linkage. Thirteen country case studies of data linkage approaches were selected and analysed. Rather than being comprehensive, this review aimed to identify varied and potentially useful case studies to showcase different approaches to data linkage worldwide. A conceptual framework was developed to guide the selection and description of case studies. Information was first identified and collected from publicly available sources and a profile was then created for each country and each case study; these profiles were forwarded to appropriate country experts for validation and completion. The report presents an overview of the included countries and their case studies (Chapter 2), with key data per country and case study in the appendices. This is followed by a closer look at the possibilities of using routine data (Chapter 3); the different approaches to linkage (Chapter 4); the different access routes for researchers (Chapter 5); the use of data for research from electronic patient or health records (Chapter 6); foundational considerations related to data safety, privacy and governance (Chapter 7); recent developments in cross-border data sharing and the European Health Data Space (Chapter 8); and considerations of changes and responses catalysed by the COVID-19 pandemic as related to the generation and secondary use of data (Chapter 9). The review ends with overall conclusions on the necessary characteristics of data to inform research relevant for policy and highlights some insights to inspire possible future solutions - less or more disruptive - for countries looking to expand their use of data (Chapter 10). It emphasises that investing in data linkage for secondary use will not only contribute to the strengthening of national health systems, but also promote international cooperation and contribute to the international visibility of scientific excellence.

The Slovenian Patient Summary: One Digital Record, Multitude of Applications.

The Central Registry of Patient Data is the most complex public information system in the Slovenian healthcare, providing valuable information to patients, healthcare professionals and health authorities. Its most important element is a Patient Summary, which contains essential clinical data required to ensure safe treatment of patients at a point of care. This article focuses on the Patient Summary and the review of its application aspects, especially in relation to the Vaccination Registry. The research employs a case study framework, supported by focus group discussions being a primary data collection technique. Single-entry collection and reuse of data, as implemented in the case of Patient Summary, could significantly optimize current practices and necessary resources for processing health data. Moreover, the research reveals that structured and standardized data from the Patient Summary could provide an important input for primary use and other applications across the digital landscape in the Slovenian healthcare system.

Accelerated Digitalization of the Epidemiological Measures: Overcoming the Technological and Process Complexities of Establishing the EU Digital COVID Certificate in Slovenia.

OBJECTIVE: In order to facilitate free movement of EU citizens during the COVID-19 pandemic, in early 2021 the European Commission proposed the establishment of an EU Digital COVID Certificate. By 1 July 2021, all EU Member States have successfully implemented the EU Digital COVID Certificate. The technological and procedural complexities encountered while establishing the EU Digital COVID Certificate in Slovenia are reviewed in this article. METHODS: This research employs a case study methodology. Controlled focus group sessions comprising eighteen eminent experts (not including medical and other expert groups involved in the epidemiological measures) in charge of the EU Digital COVID Certificate and other national eHealth services in Slovenia were used as the primary data collection technique. Focus group discussions were preceded by an all-encompassing review of the literature and the examination of numerous materials covering the EU Digital COVID Certificate-related content. RESULTS: The study findings reveal that the technological and process complexities are associated with the fragmented data sources and complicated and abundant business rules used for the generation and verification of the EU Digital COVID Certificate. However, despite the technological, process and other impediments that arose during the establishment of the EU Digital COVID Certificate in Slovenia, it can be argued that the approach used and stakeholder commitment, especially in critical pandemic conditions, offered the much-desired harmonisation and application of this digital service at the EU level. CONCLUSIONS: The study highlights the importance of a sound and coherent model for the impending establishment of cross-border eHealth services and suggests that the ad hoc implementation of such challenging and delicate digital solutions in the future will only be feasible with the prior construction of robust and interoperable digital health infrastructures across the EU Member States.

Human Resource Planning in Health Care: Outlining a Basic Model and Related Complexities.

The effectiveness of the health care system is largely dependent on the knowledge, skills, and motivation of health care workers, which was particularly evident during the COVID-19 pandemic. The systemic planning of human resources is therefore an important condition for ensuring the sustainability and efficiency of the health care system. This article focuses on outlining a basic model of human resource planning in health care and the investigation of related complexities. An in-depth analysis framework based on various materials and evidence is proposed in order to outline the factors that influence human resource planning in health care. In order to achieve greater credibility of the research results, the in-depth analytical process employs an extensive review of the literature and carries out an investigation of numerous sources and materials, in both the national and international contexts. The purpose of the human resource planning initiatives in health care is to calculate the needed number of health care workers in the future, on the basis of past and current data, and based on assumptions about future trends in supply and demand. The research findings reveal that this is a very challenging task, as there are typically many unknowns in future planning, and, in addition, planners often face a lack of reliable data and systemic deficiencies. Moreover, the study indicates that unplanned and delayed solutions concerning the human resource needs in health care can only alleviate problems, but in no way can they replace effective strategic measures and timely structural changes within the health care ecosystem.

Introduction of the EU Digital COVID Certificate in Slovenia: Technological and Process Aspects.

In early 2021, the European Commission presented a proposal to introduce an EU Digital COVID Certificate, which should enable safe border crossings for citizens within the EU during the COVID-19 pandemic. Subsequently, all EU Member States successfully introduced the EU Digital COVID Certificate by 1 July 2021. This article focuses on a review of the technological and process aspects identified in the introduction of the EU Digital COVID Certificate in Slovenia. The research applies a case study framework, including focus group discussions, as the primary data collection method. The research findings expose the technological and process complexities related to the dispersed data sources and fairly intricate and copious business rules used for the creation of the EU Digital COVID Certificate. Moreover, the study implies that the ad hoc introduction of such demanding and sensitive digital solutions in the future will not be possible without the establishment of effective national health information infrastructures across the EU.

Towards a Comprehensive Strategy for the Management of Rare Diseases in Slovenia: Outlining an IT-Enabled Ecosystemic Approach.

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.

eHealth Patient Portal - Becoming an Indispensable Public Health Tool in the Time of Covid-19.

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.

Effects of Ultrafine Particles in Ambient Air on Primary Health Care Consultations for Diabetes in Children and Elderly Population in Ljubljana, Slovenia: A 5-Year Time-Trend Study.

Epidemiological studies indicate that exposure to ultrafine particles (UFP) in ambient air represents an important environmental public health issue. The aim of this study was to determine the association between UFP in ambient air and the daily number of consultations in the primary health care unit due to diabetes mellitus in children and elderly population of the Municipality of Ljubljana. A 5-year time-trend ecological study was carried out for the period between 1 January 2013 and 31 December 2017. The daily number of primary health care consultations due to diabetes mellitus among children and elderly population was observed as the health outcome. Daily mean UFP concentrations (different size from 10 to 100 nm) were measured and calculated. Poisson regression analysis was used to investigate the association between the observed outcome and the daily UFP, particulate matter fine fraction (PM2.5), and particulate matter coarse fraction (PM10) concentrations, adjusted to other covariates. The results show that the daily number of consultations due to diabetes mellitus were highly significantly associated with the daily concentrations of UFP (10 to 20 nm; p ≤ 0.001 and 20 to 30 nm; p ≤ 0.001) in all age groups and in the elderly population. In observed the population of children, we did not confirm the association. Findings indicate that specified environmental challenges should be addressed by comprehensive public health strategies leading to the coordinated cross-sectoral measures for the reduction of UFP in ambient air and the mitigation of adverse health effects.

Charting Early Developmental Trajectory of a Pilot Rare Disease Registry in Slovenia.

Active surveillance of rare diseases enables evidence-informed policymaking, wide-ranging monitoring of rare disease patients, and subsequently assists progressively complex clinical and research needs. This article charts the initial steps for the development of a pilot rare disease registry in Slovenia. The research applies a case study design, while the collection of data was carried out through focus group discussions with 24 eminent experts from the field. The research results reveal the necessity for choosing an adequate development approach and point out that successful development of the national rare disease registry requires well-orchestrated efforts of all stakeholders. This inevitably includes effective preparation and implementation of the national rare disease policy, along with the divergence of clinical, organizational, and technological factors, and their integration with the long-standing public health goals.

Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia.

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 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.

CrowdHEALTH: Big Data Analytics and Holistic Health Records.

The aim of this paper is to present examples of big data techniques that can be applied on Holistic Health Records (HHR) in the context of the CrowdHEALTH project. Real-time big data analytics can be performed on the stored data (i.e. HHRs) enabling correlations and extraction of situational factors between laboratory exams, physical activities, biosignals, medical data patterns, and clinical assessment. Based on the outcomes of different analytics (e.g. risk analysis, pathways mining, forecasting and causal analysis) on the aforementioned HHRs datasets, actionable information can be obtained for the development of efficient health plans and public health policies.

The CrowdHEALTH project and the Hollistic Health Records: Collective Wisdom Driving Public Health Policies.

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.

Two Years of ePrescription in Slovenia - Applications and Potentials.

ePrescription is one of the most successful eHealth solutions in Slovenia. Since its national roll-out in early 2016, the quality of its operations has been constantly improving, and the number of users has been growing ever since to reach today's 90% of all healthcare providers. ePrescription facilitates more transparent and safer prescribing of medications, an overview of possible medication interactions, and reduction of administrative and opportunity costs. This paper initially explores the current state of ePrescription in Slovenia and different aspects of its application. Based on the research findings, the paper finally outlines potentials of ePrescription, which could be transformed into tangible benefits with particular implications for healthcare system. The research is based on focus group methodology. Structured discussions were conducted with eminent experts currently in charge of ePrescription (and other eHealth solutions) development and implementation in Slovenia. Research results imply that certain application aspects are relatively easy to define and evaluate, while the overall potentials of ePrescription are difficult to determine in many cases, and relatively unexplored in terms of their implications and operational feasibility.

Special Topic Interoperability and EHR: Combining openEHR, SNOMED, IHE, and Continua as approaches to interoperability on national eHealth.

OBJECTIVES: The main aims of the paper comprise the characterization and examination of the potential approaches regarding interoperability. This includes openEHR, SNOMED, IHE, and Continua as combined interoperability approaches, possibilities for their incorporation into the eHealth environment, and identification of the main success factors in the field, which are necessary for achieving required interoperability, and consequently, for the successful implementation of eHealth projects in general. METHODS: The paper represents an in-depth analysis regarding the potential application of openEHR, SNOMED, IHE and Continua approaches in the development and implementation process of eHealth in Slovenia. The research method used is both exploratory and deductive in nature. The methodological framework is grounded on information retrieval with a special focus on research and charting of existing experience in the field, and sources, both electronic and written, which include interoperability concepts and related implementation issues. RESULTS: The paper will try to answer the following inquiries that are complementing each other: 1. Scrutiny of the potential approaches, which could alleviate the pertinent interoperability issues in the Slovenian eHealth context. 2. Analyzing the possibilities (requirements) for their inclusion in the construction process for individual eHealth solutions. 3. Identification and charting the main success factors in the interoperability field that critically influence development and implementation of eHealth projects in an efficient manner. CONCLUSIONS: Provided insights and identified success factors could serve as a constituent of the strategic starting points for continuous integration of interoperability principles into the healthcare domain. Moreover, the general implementation of the identified success factors could facilitate better penetration of ICT into the healthcare environment and enable the eHealth-based transformation of the health system especially in the countries which are still in an early phase of eHealth planning and development and are often confronted with differing interests, requirements, and contending strategies.

CrowdHEALTH: Holistic Health Records and Big Data Analytics for Health Policy Making and Personalized Health.

Today's rich digital information environment is characterized by the multitude of data sources providing information that has not yet reached its full potential in eHealth. The aim of the presented approach, namely CrowdHEALTH, is to introduce a new paradigm of Holistic Health Records (HHRs) that include all health determinants. HHRs are transformed into HHRs clusters capturing the clinical, social and human context of population segments and as a result collective knowledge for different factors. The proposed approach also seamlessly integrates big data technologies across the complete data path, providing of Data as a Service (DaaS) to the health ecosystem stakeholders, as well as to policy makers towards a "health in all policies" approach. Cross-domain co-creation of policies is feasible through a rich toolkit, being provided on top of the DaaS, incorporating mechanisms for causal and risk analysis, and for the compilation of predictions.

Electronic Certification of Death in Slovenia - System Considerations and Development Opportunities.

BACKGROUND: Accurate and consistent death certification facilitates morbidity and mortality surveillance, and consequently supports evidence-informed health policies. OBJECTIVES: The paper initially explores the current death certification practice in Slovenia, and identifies related deficiencies and system inconsistencies. Finally, the paper outlines a conceptualization of ICT-based model of death certification including renovation of business processes and organizational changes. METHODS: The research is based on focus group methodology. Structured discussions were conducted with 29 experts from cross-sectional areas related to death certification. RESULTS: Research results imply that effective ICT-based transformation of the existing death certification model should involve a redefinition of functions and relationships between the main actors, as well as a reconfiguration of the technological, organizational, and regulatory elements in the field. CONCLUSION: The paper provides an insight into the complexities of the death certification and may provide the groundwork for ICT-based transformation of the death certification model in Slovenia.