Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients' Access to Electronic Health Records in 4 European Countries: Framework Evaluation Study.

BACKGROUND: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland, Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-country analysis has not been developed. OBJECTIVE: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use. METHODS: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. RESULTS: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared with patients; human-computer interface; people; workflow and communication; the health care organization's internal policies, procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the health care system context dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries. CONCLUSIONS: This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs.

Patient Input into the Electronic Health Record: Co-Designing Solutions with Patients and Healthcare Professionals.

Patient-generated health data (PGHD) is the person's health-related data collected outside the clinical environment. Integrating this data into the electronic health record (EHR) supports better patient-provider communication and shared decision-making, empowering patients to actively manage their health conditions. In this study, we investigated the essential features needed for patients and healthcare providers to effectively integrate PGHD functionality into the EHR system. Through our collaborative design approach involving healthcare professionals (HCPs) and patients, we developed a prototype and suggestion, using Estonia as a model, which is the ideal approach for collecting and integrating PGHD into the EHR.

Distributed Ledger-Based System to Support Health Data Integrity and Transparency.

This article addresses critical health data integrity by proposing an HF (Hyperledger Fabric)-based architecture with integration into the global health data architecture based on distributed content-addressable storage networks.

Standardizing X-Ray and Angiography Procedure Coding in Estonia: Validating TermX Through the Implementation of SNOMED CT.

BACKGROUND: The existence of multiple code systems and standards has highlighted the necessity for innovative solutions to bridge these discrepancies. OBJECTIVES: This research investigates the utilisation of TermX to tackle the challenges of interoperability in radiology procedures, with a specific emphasis on angiography and X-ray modalities. RESULTS: The study produced a revised RadLex data model and mapping guide, designed to classify radiology services using TermX. In total, 380 concepts were required to comprehensively describe all 622 procedures examined. CONCLUSIONS: Our study demonstrates the effectiveness of TermX in simplifying the process of mapping between code systems, thus enabling more efficient analysis, and reporting of data.

TermX: A Game Changer in the Healthcare Interoperability.

The necessity for robust, enduring, and relevant healthcare interoperability is universal across all clinical domains. However, we identified a gap in the availability of open-source, no-cost, high-quality tools that offer multilingual support and an advanced graphical interface. To address this, we developed TermX, an open-source platform to harmonise terminology and support interoperability between healthcare institutions and systems. TermX incorporates a terminology server, a Wiki, a model designer, a transformation editor, and tools for authoring and publishing. TermX is designed to develop terminology and implementation guides for healthcare systems at both the national and regional levels. It aims to ensure open, standardised access to published data and guarantee semantic interoperability based on the FHIR standard.

Assessing Opportunities and Barriers to Improving the Secondary Use of Health Care Data at the National Level: Multicase Study in the Kingdom of Saudi Arabia and Estonia.

BACKGROUND: Digitization shall improve the secondary use of health care data. The Government of the Kingdom of Saudi Arabia ordered a project to compile the National Master Plan for Health Data Analytics, while the Government of Estonia ordered a project to compile the Person-Centered Integrated Hospital Master Plan. OBJECTIVE: This study aims to map these 2 distinct projects' problems, approaches, and outcomes to find the matching elements for reuse in similar cases. METHODS: We assessed both health care systems' abilities for secondary use of health data by exploratory case studies with purposive sampling and data collection via semistructured interviews and documentation review. The collected content was analyzed qualitatively and coded according to a predefined framework. The analytical framework consisted of data purpose, flow, and sharing. The Estonian project used the Health Information Sharing Maturity Model from the Mitre Corporation as an additional analytical framework. The data collection and analysis in the Kingdom of Saudi Arabia took place in 2019 and covered health care facilities, public health institutions, and health care policy. The project in Estonia collected its inputs in 2020 and covered health care facilities, patient engagement, public health institutions, health care financing, health care policy, and health technology innovations. RESULTS: In both cases, the assessments resulted in a set of recommendations focusing on the governance of health care data. In the Kingdom of Saudi Arabia, the health care system consists of multiple isolated sectors, and there is a need for an overarching body coordinating data sets, indicators, and reports at the national level. The National Master Plan of Health Data Analytics proposed a set of organizational agreements for proper stewardship. Despite Estonia's national Digital Health Platform, the requirements remain uncoordinated between various data consumers. We recommended reconfiguring the stewardship of the national health data to include multipurpose data use into the scope of interoperability standardization. CONCLUSIONS: Proper data governance is the key to improving the secondary use of health data at the national level. The data flows from data providers to data consumers shall be coordinated by overarching stewardship structures and supported by interoperable data custodians.

A reference architecture for personal health data spaces using decentralized content-addressable storage networks.

Introduction: This paper addresses the dilemmas of accessibility, comprehensiveness, and ownership related to health data. To resolve these dilemmas, we propose and justify a novel, globally scalable reference architecture for a Personal Health Data Space (PHDS). This architecture leverages decentralized content-addressable storage (DCAS) networks, ensuring that the data subject retains complete control and ownership of their personal health data. In today's globalized world, where people are increasingly mobile for work and leisure, healthcare is transitioning from episodic symptom-based treatment toward continuity of care. The main aims of this are patient engagement, illness prevention, and active and healthy longevity. This shift, along with the secondary use of health data for societal benefit, has intensified the challenges associated with health data accessibility, comprehensiveness, and ownership. Method: The study is structured around four health data use case scenarios from the Estonian National Health Information System (EHIS): primary medical use, medical emergency use, secondary use, and personal use. We analyze these use cases from the perspectives of accessibility, comprehensiveness, and ownership. Additionally, we examine the security, privacy, and interoperability aspects of health data. Results: The proposed architectural solution allows individuals to consolidate all their health data into a unified Personal Health Record (PHR). This data can come from various healthcare institutions, mobile applications, medical devices for home use, and personal health notes. Discussions: The comprehensive PHR can then be shared with healthcare providers in a semantically interoperable manner, regardless of their location or the information systems they use. Furthermore, individuals maintain the autonomy to share, sell, or donate their anonymous or pseudonymous health data for secondary use with different systems worldwide. The proposed reference architecture aligns with the principles of the European Health Data Space (EHDS) initiative, enhancing health data management by providing a secure, cost-effective, and sustainable solution.

A Nordic Perspective on Patient Online Record Access and the European Health Data Space.

The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA's potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients' ORA-NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.

Evaluation of deep learning-based depression detection using medical claims data.

Human accuracy in diagnosing psychiatric disorders is still low. Even though digitizing health care leads to more and more data, the successful adoption of AI-based digital decision support (DDSS) is rare. One reason is that AI algorithms are often not evaluated based on large, real-world data. This research shows the potential of using deep learning on the medical claims data of 812,853 people between 2018 and 2022, with 26,973,943 ICD-10-coded diseases, to predict depression (F32 and F33 ICD-10 codes). The dataset used represents almost the entire adult population of Estonia. Based on these data, to show the critical importance of the underlying temporal properties of the data for the detection of depression, we evaluate the performance of non-sequential models (LR, FNN), sequential models (LSTM, CNN-LSTM) and the sequential model with a decay factor (GRU-Δt, GRU-decay). Furthermore, since explainability is necessary for the medical domain, we combine a self-attention model with the GRU decay and evaluate its performance. We named this combination Att-GRU-decay. After extensive empirical experimentation, our model (Att-GRU-decay), with an AUC score of 0.990, an AUPRC score of 0.974, a specificity of 0.999 and a sensitivity of 0.944, proved to be the most accurate. The results of our novel Att-GRU-decay model outperform the current state of the art, demonstrating the potential usefulness of deep learning algorithms for DDSS development. We further expand this by describing a possible application scenario of the proposed algorithm for depression screening in a general practitioner (GP) setting-not only to decrease healthcare costs, but also to improve the quality of care and ultimately decrease people's suffering.

The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia.

BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey.

Preserving Decentralized EHR-s Integrity.

A blockchain and decentralized storage technology-based architecture is proposed to support the integrity of Electronic Health Records (EHRs).

A country-wide teledermatoscopy service in Estonia shows results comparable to those in experimental settings in management plan development and diagnostic accuracy: A retrospective database study.

Background: Teledermatoscopy accuracy has been examined in experimental settings and is recommended for primary care despite lacking real-world implementation evidence. A teledermatoscopy service has been provided in Estonia since 2013, where lesions are evaluated based on the patient's or general practitioner's suggestion. Objective: The management plan and diagnostic accuracy of a real-world store-and-forward teledermatoscopy service for melanoma diagnosis were evaluated. Methods: A retrospective study analyzed 4748 cases from 3403 patients using the service between October 16, 2017 and August 30, 2019 by matching country-wide databases. Management plan accuracy was calculated as the percentage of melanoma found that was managed correctly. Diagnostic accuracy parameters were sensitivity, specificity, and positive and negative predictive values. Results: Management plan accuracy for melanoma detection was 95.5% (95% CI, 77.2-99.9). Diagnostic accuracy showed a sensitivity of 90.48% (95% CI, 69.62-98.83) and a specificity of 92.57% (95% CI, 91.79-93.31). Limitations: Matching the lesions was limited to SNOMED CT location standard precision. Diagnostic accuracy was calculated based on a combination of diagnosis and management plan data. Conclusion: Teledermatoscopy for detecting and managing melanoma in real-world clinical practice displays results comparable with those in experimental setting studies.

Digital Health Data Capture with a Controlled Natural Language.

Written text has been the preferred medium for storing health data ever since Hippocrates, and the medical narrative is what enables a humanized clinical relationship. Can't we admit natural language as a user-accepted technology that has stood against the test of time? We have previously presented a controlled natural language as a human-computer interface for semantic data capture already at the point of care. Our computable language was driven by a linguistic interpretation of the conceptual model of the Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT). This paper presents an extension that allows the capture of measurement results with numerical values and units. We discuss the relation our method can have with emerging clinical information modelling.

Migration from HL7 CDA to FHIR in Infectious Disease System of Estonia.

On the basis of the Estonian National Health System, we propose a universal and reusable methodology for migrating HL7 CDA documents or their components.

A systematic literature review of AI-based digital decision support systems for post-traumatic stress disorder.

Objective: Over the last decade, an increase in research on medical decision support systems has been observed. However, compared to other disciplines, decision support systems in mental health are still in the minority, especially for rare diseases like post-traumatic stress disorder (PTSD). We aim to provide a comprehensive analysis of state-of-the-art digital decision support systems (DDSSs) for PTSD. Methods: Based on our systematic literature review of DDSSs for PTSD, we created an analytical framework using thematic analysis for feature extraction and quantitative analysis for the literature. Based on this framework, we extracted information around the medical domain of DDSSs, the data used, the technology used for data collection, user interaction, decision-making, user groups, validation, decision type and maturity level. Extracting data for all of these framework dimensions ensures consistency in our analysis and gives a holistic overview of DDSSs. Results: Research on DDSSs for PTSD is rare and primarily deals with the algorithmic part of DDSSs (n = 17). Only one DDSS was found to be a usable product. From a data perspective, mostly checklists or questionnaires were used (n = 9). While the median sample size of 151 was rather low, the average accuracy was 82%. Validation, excluding algorithmic accuracy (like user acceptance), was mostly neglected, as was an analysis concerning possible user groups. Conclusion: Based on a systematic literature review, we developed a framework covering all parts (medical domain, data used, technology used for data collection, user interaction, decision-making, user groups, validation, decision type and maturity level) of DDSSs. Our framework was then used to analyze DDSSs for post-traumatic stress disorder. We found that DDSSs are not ready-to-use products but are mostly algorithms based on secondary datasets. This shows that there is still a gap between technical possibilities and real-world clinical work.

An evaluation of e-prescribing at a national level.

OBJECTIVE: The aim of the article is to describe the process of implementing the Estonian national second generation electronic prescription service (e-prescription) and determine if the objectives set by the Estonian government were fulfilled. MATERIALS AND METHODS: The study presents an analysis of both retrospective and current data in the evaluation phase of a design research project. Sources include, among others, publicly available documents and previous evaluation studies. RESULTS: According to all of the major stakeholders, the Estonian e-prescription service has very high usability and user satisfaction scores have been high. There is only little empirical evidence available to confirm if the benefits aimed for in the creation of the service were achieved. From a public administration viewpoint, the implementation of e-prescription has led to potential efficiency gains. CONCLUSION: The Estonian second-generation e-prescription system is widely used by citizens, healthcare providers and administrators alike. However, there are gaps in measuring the impact of the service, especially with respect to time savings and enhanced healthcare quality. Additional functionalities will be key drivers in creating benefits for all stakeholders. Future nationwide e-health services should have a more rigorous evaluation process carried out during the design and implementation stages.

Economically affordable anatomical kidney phantom with calyxes for puncture and drainage training in interventional urology and radiology.

BACKGROUND: Trends in interventional radiology and urology training are orientated towards reducing costs and increasing efficiency. In order to comply with the trends, we propose training on inexpensive patient-specific kidney phantoms. PURPOSE: To develop a new kidney phantom for puncture and drainage training in interventional urology and radiology, and to evaluate their anatomical correctness and suitability for training compared to the traditional way of training on home-made phantoms. MATERIAL AND METHODS: A CASE STUDY FOR VALIDATION OF KIDNEY PHANTOMS WAS CONDUCTED WITH NINE RADIOLOGY STUDENTS DIVIDED INTO TWO GROUPS: one trained on standard home-made training phantom (n = 4) and the other on our kidney phantoms (n = 5). Another test phantom was used to evaluate the effectiveness of the training of the two groups. The tests were video recorded and analyzed. Duration of the procedure was used as the primary indicator of procedure's quality. Comparison tests were also conducted with professional radiologists. Anatomical correctness of the kidney phantom was evaluated by comparing the post mortem kidney scans with reconstructed models from CT scans. Subjective feedback was also collected from the participants. Wider use of kidney phantoms was analyzed. RESULTS: The average volumetric difference between post mortem kidney scans and reconstructed CT kidney models was 4.70 ± 3.25%. All five students practicing on the kidney phantom improved their performance and the results were almost equal to the results of the professional radiologist while in the other group two students out of four trained on standard home-made training phantoms failed to improve their performance. However, the small number of test subjects prevents us from drawing general conclusions about the efficiency of the new practice. The kidney phantoms were found usable also for nephrostomy catheter placement training under fluoroscopy. CONCLUSION: The feedback from radiologists showed that the anatomically correct features of the phantom is an added value for the training and has a potential to increase the quality of minimally invasive procedures in general.

A comparison of approaches to providing patients access to summary care records across old and new europe: an exploration of facilitators and barriers to implementation.

Providing online access to their medical records should empower patients. National health services in Estonia, France, and England introduced systems to provide online access to summary health data. The Estonian patient access called "Patient Portal" shares similarities with the French system "Dossier Médical Personnel" (DMP). Both are patient-controlled records. The English system "Summary Care Record" (SCR) provided access to patients through "HealthSpace," though has now been replaced by encouraging access to GP records. Denmark and Ireland also provided access rights to patients so they could view their records. Romania, Croatia, and Greece do not have national systems. The aim of this study is to compare adoption and uptake of patient access to summary data. The Estonian record was used by 3.6% of the population, the French one by 0.5% and the English system is due for closure with only 0.01% signing up for the most comprehensive access. Few countries across Europe have adopted patient access to summary health data at a national level, and where introduced, medical records have been accessed by less than 5% of the population.

Low cost anatomically realistic renal biopsy phantoms for interventional radiology trainees.

This paper describes manufacturing of economically affordable renal biopsy phantoms for radiology residents and practicing radiologists. We reconstructed a realistic 3-dimensional patient-specific kidney model from CT data, manufactured an organ mould and casted the kidney phantoms. Using gelatin gel materials with calibrated parameters allowed making phantoms with realistic mechanical, ultrasound and CT properties including various pathologies. The organ phantoms with cysts included were further casted into gelatin gel medium. They were validated by radiology residents in biopsy training and compared against self-made phantoms traditionally used in the curriculum of interventional radiology. The realism, durability, price and suitability for training were evaluated. The results showed that our phantoms are more realistic and easier to use than the traditional ones. Our proposed technology allows creating a low-cost (50$/kg) alternative to the pricy commercial training phantoms available today.

Understanding drug uptake and binding within targeted disease micro-environments in patients: a new tool for translational medicine.

BACKGROUND: For many common global diseases, such as cancer, diabetes, neurodegenerative and cardiovascular diseases there is an unmet need for diagnosing early indications of disease that could enable medical intervention and early treatment. The treatment of these diseases will require detailed knowledge of targeted pathways involved in disease pathogenesis but also the mode of drug actions at the biological location on these targets. Translational medicine is a new area of research where expert from different disciplines involved in basic science and clinical disciplines meet and join forces. Mode-of-drug-action mechanisms elucidation is key in the characterization of drugs that can relate to both efficacy and safety. METHODS: Matrix assisted laser desorption/ionization mass spectrometry imaging (MALDI-MSI) was used providing evidence into the fate (destinations and distributions) of administered drugs within tumor regions of lung compartments. RESULTS: We hereby present a pulmonary study in which we have isolated lung tissue after inhaled drug administration and then localized the drug within airway wall compartments. The histology also provides evidence of drug binding to smooth muscle cell microenvironments. We also identified lung tissue regions with tumor cell invasion in these COPD patients. CONCLUSIONS: The ultimate goal is to identify bridging comprehension that forms a knowledge base that can be used by society to develop a better treatment and medicine for patients. Our results demonstrated that robust imaging data could be generated confirming drug localization in pulmonary regions of COPD patients with tumor pathology. TRIAL REGISTRATION: Tallinn Medical Research Ethical Committee decision #1724, 18.06.2009.