Guidelines for the Advancement of Electronic Health Records

The Guidelines have been proposed for the development of electronic health records (EHR) that must meet the needs of all relevant stakeholders. The system of electronic health records should contribute to the improvement of health services to healthcare users, support the daily work of health professionals and enable continuous improvement of quality at all levels of the health care system. The following concepts are defined: electronic health record, electronic medical record (EMR) and electronic personal health record (EpHR); Any health care user should have one EHR, one EpHR, and multiple EMRs. The parts of the EHR, i.e., the EMR and EpHR, should not be physically kept in the same place, but must be interconnected in case of need (via the health care user unique identification and authentication rules). All EMRs contain data collected by health professionals in health facilities (primary health care, polyclinics, hospitals, public health institutes, etc.). This data can be entered directly or transmitted from medical devices. The EpHR contains data collected and maintained by the health care user. They can be recorded directly or transmitted from a medical device. Data in the EHR may be made available to authorized persons only. Data protection in the EHR should be ensured in three ways: technically, regulatory and through codes of ethics, in line with international initiatives (certification, EU regulations, standards, etc.). The EHR and its components should be used for both primary and secondary purposes. The primary use of the data relates to the individual (diagnosis, therapy, vaccination, etc.). The secondary use relates to population groups (reporting on the health status of the population, the quality of health care, the effects of preventive activities, funding, and research, etc.). The EHR data (structured or not) should be defined by health care professional associations. The ICT experts need to offer optimal technological solutions. The EHR development strategy, as well as supervision (medical, legal, technical, and ethical aspects, as well as standardization) should be entrusted to the institution at the national level, i.e., the Central eHealth Authority. EHR (EMR and EpHR) should be developed in stages, step by step, depending on current knowledge, technology, and material resources

Students’ competence as eHealth and eWelfare service developers based on the International Medical Informatics Association IMIA’s curriculum structure and design thinking

Multidisciplinary cooperation is required to develop digital health and welfare services. The aim of this article is to determine the eHealth and eWelfare service design competences that multidisciplinary students need to be able to develop digital services in health and social care. A secondary aim is to develop a measurement tool based on the International Medical Informatics Association (IMIA) curriculm for future assessment of such competences. Based on basic descriptive statistics results show that most students felt they have good skills in e-communication, basic IT, literature retrieval and research methods; some students, however, reported that they lack these basic skills. It is crucial that instructors be aware of student variations so that they can support the learning of the basics and further the biomedical and health informatics (BMHI) and design thinking (DT) competences. Principal components analysis (PCA) was used to determine the principal components (PC) from measured responses to BMHI and DT sections. Data were collected from 64 students. The components were explored and compared to constructs used to design the original measurement tool. A twenty-component structure showed the simplest solution and explained (80%, 68%, 73%) of variances in BMHI and 83% DT competences, respectively, in the measurement tool, each part of which was analysed by PCA. The PC can be the core areas in different professions taking part in developing eHealth and eWelfare. The parts of measurement tools relied on item reliability and content validity testing. This study provided a base for further measurement tool revision and theoretical testing

An overview of Personalized Medicine landscape and policies in the European Union

Background: The spread of Personalized Medicine (PM) over the last decade defined a revolution in healthcare systems. PM is among the priorities of the European Commission's research agenda, which funded the IC2PerMed international project aiming to integrate China into the International Consortium of PM (ICPerMed). In the context of this project, we mapped the existing policies related to PM in the European Union (EU) and at the EU Member States (EU-MS) level. Methods: PubMed, Google Scholar, Google, Microsoft and national and international institutions' official repositories were searched in order to identify documents on PM-related policies, programmes and action plans at the EU and EU-MS level, published up to December 2020. Results: We identified 28 policies in the EU aimed at improving public health promoting and fostering PM implementation, through some actions including the standardization of good medical practice, use of big data and digital innovation, data sharing and cross-border interoperability, healthcare sustainability, disease prevention and patients'/citizens' engagement. We identified 23 policies at EU-MS level which, notwithstanding national differences, have a common focus, such as patient-tailored treatment and targeted prevention, education of healthcare workers, research and innovation, big data harmonization and healthcare system sustainability. Conclusions: The definition of an integrated regulatory framework is essential to turn PM into an opportunity for citizens and patients with the involvement of all the stakeholders. This work can provide a valuable tool for decision-makers to define common approaches, priorities for research, development and increase international collaboration, which could overcome the fragmented European scenario and align the future direction on PM

Design science research towards resilient cyber-physical eHealth systems

Most eHealth systems are cyber-physical systems (CPSs) making safety-critical decisions based on information from other systems not known during development. In this design science research, a conceptual resilience governance framework for eHealth CPSs is built utilizing 1) cybersecurity initiatives, standards and frameworks, 2) science of design for software-intensive systems and 3) empowering cyber trust and resilience. According to our study, a resilient CPS consists of two sub-systems: the proper resilient system and the situational awareness system. In a system of CPSs, three networks are composed: platform, software and social network. The resilient platform network is the basis on which information sharing between stakeholders could be created via software layers. However, the trust inside social networks quantifies the pieces of information that will be shared - and with whom. From citizens’ point of view, eHealth is wholeness in which requirements of information security hold true. Present procedures emphasize confidentiality at the expense of integrity and availability, and regulations/instructions are used as an excuse not to change even vital information. The mental-picture of cybersecurity should turn from “threat, crime, attack” to “trust” and “resilience”. Creating confidence in safe digital future is truly needed in the integration of the digital and physical world’s leading to a new digital revolution. The precondition for the exchange of information “trust” must be systematically built at every CPS’ level. In health sector, increasingly interconnected social, technical and economic networks create large complex CPSs, and risk assessment of many individual components becomes cost and time prohibitive. When no-one can control all aspects of CPSs, protection-based risk management is not enough to help prepare for and prevent consequences of foreseeable events, but resilience must be built into systems to help them quickly recover and adapt when adverse events do occur.Most eHealth systems are cyber-physical systems (CPSs) making safety-critical decisions based on information from other systems not known during development. In this design science research, a conceptual resilience governance framework for eHealth CPSs is built utilizing 1) cybersecurity initiatives, standards and frameworks, 2) science of design for software-intensive systems and 3) empowering cyber trust and resilience. According to our study, a resilient CPS consists of two sub-systems: the proper resilient system and the situational awareness system. In a system of CPSs, three networks are composed: platform, software and social network. The resilient platform network is the basis on which information sharing between stakeholders could be created via software layers. However, the trust inside social networks quantifies the pieces of information that will be shared - and with whom. From citizens’ point of view, eHealth is wholeness in which requirements of information security hold true. Present procedures emphasize confidentiality at the expense of integrity and availability, and regulations/instructions are used as an excuse not to change even vital information. The mental-picture of cybersecurity should turn from “threat, crime, attack” to “trust” and “resilience”. Creating confidence in safe digital future is truly needed in the integration of the digital and physical world’s leading to a new digital revolution. The precondition for the exchange of information “trust” must be systematically built at every CPS’ level. In health sector, increasingly interconnected social, technical and economic networks create large complex CPSs, and risk assessment of many individual components becomes cost and time prohibitive. When no-one can control all aspects of CPSs, protection-based risk management is not enough to help prepare for and prevent consequences of foreseeable events, but resilience must be built into systems to help them quickly recover and adapt when adverse events do occur

Transatlantic collection of health informatics competencies

The electronic collection, processing and management of information is becoming increasingly important in healthcare. Because of the nature of the healthcare provision and delivery process, where the health, safety and quality of human lives are impacted on a daily basis, it is critical that those who work in the field are competent and able to perform all clinical, administrative, research and technology-impacted facets of their roles.The United States and the European Union have been working to encourage broader and more effective use of Information and Communications Technology (ICT) within healthcare. The development, use and governance of ICT within healthcare, often called health informatics, requires a number of competences which need to be identified and integrated into relevant skills assessment, education and training. Ultimately, this will help produce a more proficient and a more confident mobile health informatics-empowered workforce.A structured set of health information technology and eHealth implementation competences was collected in a co-operation project by voluntary experts in USA and European Union. The project took a deliberately broad starting point, seeking and reviewing an extensive range of related competencies. The skills cover the following domains of professions working with health information technology: direct patient care; administrative; engineering/information, communication, and technology (ICT); informatics; and research and biomedicine. The aggregation of over one thousand competencies was classified to a baseline set of skills and four levels of expertise in 33 focus areas according to Bloom’s taxonomy. The data set also contains definitions of 268 ‘typical’ professional roles. The use of the collection of competencies is supported by an open access web tool through which all the competencies can be searched through a query mechanism.The limitation of this work is that only the Acute Care segment of roles and competencies impacted by ICT was evaluated within the scope of this project, however, this subset of other care settings such as ambulatory, rehabilitative care, surgery, and others serves as a representative set of roles and competencies within the health care field as well as a being an important proof of concept for future usefulness of the work if extended beyond its current span. This project has made a contribution to the potential improvement of workforce mobility internationally

Open government data application possibilities in Estonian nutrition sector

The aim of the current piece is to investigate Open Government Data application possibilities by the example of Estonian nutrition sector. The piece goes through defining various data types and analyzing Open Government Data situation in different countries. By comparing the recent developments, it finds Estonia’s lag on Open Government Data developments compared to many other countries. By investigating more thoroughly current situation in Estonian e-service developments in healthcare, it presents the lack of success in dealing with innovation in a public sector organization. Based on existing e-services, examples are presented to illustrate the benefits and advantages of using Open Government Data in nutrition sector. By conducting a research in Estonian nutrition sector, the piece finds that awareness-level and usage of public sector e-services among people interested in healthy nutrition is low. Based on empirical internet-based research, information gathered visiting public sector events and questionnaire conducted in Estonian nutrition sector, the piece suggests that there should be a clear strategy towards Open Government Data by finding resources to establish stable version of Open Government Data Portal, giving a strong political signal towards Open Government Data and using the support of Estonian Open Data Community to facilitating events where the creation of pilot e-services using Open Government Data would be addressed.http://www.ester.ee/record=b4095551~S

A systematic review on the European legislation and policy of cross-border health care: barriers and facilitators

ABSTRACT - Background and Objectives: The legal basis of cross border health services in Europe is based on the Subsidiarity principle, which does not allow further integration of health or harmonization between Member States’ health systems. Even though there are instruments that address legal issues, governments remain responsible for health in their territory. The purpose of this systematic review is to identify and analyze the barriers and clarify facilitators of cross border collaboration and care in the European legal framework. To date, the evidence on strengths and weaknesses shows the difficulty to overcome legal and organizational barriers. However prior authorization of care abroad is against the European Union’s free movement and internal market principles, it is justified by the need for treatment and can be compensated through a reimbursement. Data Sources: A systematic review was built through an electronic search on PubMed, Web of Science, Scopus, Google Scholar, and grey literature. Study Eligibility Criteria and Methods: The aim was to include all legible articles in the English language, which connect legislation to barriers or facilitators, from 2009 to 2019. Two hundred and eighty (n=280) records were screened through the titles and abstracts and a final list of 21 papers was selected for the review. Primary data was the content of 9 studies and 12 studies used secondary data. Barriers and facilitators are linked and the second is a possible solution to the first. Results: The eight most influential barriers are connected to eHealth interoperability; member states' resistance to cooperate and exchange information; legal barrier and countries' political agenda; data protection legislation and liability and the economic barrier. The eight influential facilitators are related to possible solutions to the barriers, such as eHealth as a single market for healthcare; tools of Health Technology Assessment (HTA); European Public Health Program, and funded projects and research. Conclusions and implications of key findings: This review allows a legal and graphical analysis of the existing tools that can facilitate and improve cross borders health services. Evidence shows that the collaboration and receptivity of Member States can lead to better technology assessment, quality and common standards in health, liability, and a friendly single market for patients, that could give efficient answers in critical situations

Institutional perspective on introducing enterprise architecture : The case of the Norwegian hospital sector

Paper I, II, and III are not available as a part of the dissertation due to the copyright.The findings from this thesis point to the incongruence between the characteristics of EA and the healthcare domain as specific tensions among the EA logic and different professional logics as a source of deviation. The incongruence comes from the long-term plan-driven EA approach versus healthcare traditions and needs for ad-hoc initiatives. Other themes stem from the EA logic of process standardisation, which poses challenges in gaining acceptance and trust that the processes dinscribe appropriate clinical knowledge and provide support for local variations. Moreover, the EA vision of data integration across organisational units and across IS has implications for concerns about privacy and protection of sensitive data, but this can collide with the healthcare view on patient safety and the need for mission-critical data. This dissertation makes several contributions to research and practice. First, it augments the EA research stream by offering rich insights and specific implications related to challenges of EA institutionalisation in healthcare. A description of the enterprise architects’ logics and the EA logic supplements the EA knowledge base. Likewise, it presents a model of a predicted evolution of the EA initiatives through the phases of optimism, resistance, decline and finally, reconsolidation of the most persistent ones, unless firm mandates are established from the start. Furthermore, the study provides a model that illustrates how coexisting institutional logics maintain their distinct character while allowing compromises that shape EA operationalisation. The model shows a set of scenarios for settling tensions in project decisions. In these scenarios, EA is foregrounded, blended with other available institutional logics or suppressed. Second, this dissertation contributes to an enhanced theoretical and empirical understanding of EA institutionalisation, where regulative, normative and culturalcognitive elements create and maintain EA as an institution, and unsurprisingly, the organisational response impedes the institutionalisation process. The organisational response can be explained by selective activated institutional logics among the actors. However, with targeted institutional work from the actors that want EA to be institutionalised, the process can be reinforced. This thesis also offers some practical suggestions at the national policy level. First, financial arrangements should be assessed to encourage broader involvement from the sub-organisations. Second, through active ownership, they can address the need for enhanced EA understanding and should secure the education of the actors, not the least at the executive level, together with the targeted hires. Furthermore, the need for organisational changes related to EA is under-communicated. The thesis also makes practical suggestions to deal with the challenges, the incongruence and the consequent tensions, mainly by finding solutions that balance between the institutional logics of EA and of healthcare.publishedVersio

Data Infrastructures in the Public Sector: A Critical Research Agenda Rooted in Scandinavian IS Research

Extant Information Systems research emphasizes the strategic benefits of digitalization and value co-creation for business. Less is known, however, about the dynamics of how value is co-created in the digitalization of the public sector, where data infrastructures are increasingly adopted. We identify three core empirical challenges for value co-creation in the public sphere, corresponding to the following conceptual tenets: participation in infrastructuring processes, data curation, and data protection. We propose to draw on the Participatory Design tradition that permeates the Information Systems field in Scandinavia to critically harness the political meaning of value co-creation. Drawing on a two-year project on the design of data infrastructures in three areas of the public domain (environmental monitoring, healthcare, and smart cities), we contribute to Information Systems by proposing a research agenda consisting of three future directions for critical studies of value co-creation in data infrastructures in the public sector

E-health and e-welfare of Finland : Check Point 2022

The report provides an overview of progressive nationwide activities towards better e-services in Finland. The information system services of social welfare and health care are monitored by systematic gathering, analysis, and use of data, which allows the tracking of the progress of operations and the realisation of goals. In 2020 and 2021, six data collections were carried out to produce data for the monitoring of the Finnish ‘Information to support well-being and service renewal, eHealth and eSocial Strategy’. Some of the results presented in the report are also openly available in database cubes