To Örebro University

E-Government is now on the rise in developing countries. While developing countries can "leapfrog" technology generations, the necessary organizational change is another matter. In industrialized countries technical systems have been developed over long time in parallel with institutional development; developing countries hope to make that journey faster. Most of the e-Government implementation research focuses on developed countries. It is important to explore the relation between the literature and the findings in the context of developing countries as to come up with a gap to reduce. An interview study with 56 people in 10 government organizations involved in implementing a government-wide enterprise content management system was conducted to find out how critical success factors found in literature on implementation of information management systems relate to the situation in the Rwanda public sector to discover the step forward in Rwanda. We find a large gap between expectations and results due to a strong focus on the technical tool and little concerns about issues related to organizational change.

One-stop e-government holds potential benefits in all contexts and especially in the context of developing countries and in the Least Developed Countries (LDCs). Implementation of one-stop e-government can be challenging as it normally requires addressing a number of organisational issues including those related to the integration of the individual government information systems of different departments which traditionally function as silos; tackling organisational issues can be difficult due to the nature of the public sector. However, the contemporary literature paints a picture of scarce research on the organisational issues that impede the implementation of one-stop e-government initiatives in LDCs. This paper explores the organisational issues underlying the implementation of ‘one-stop’ e-government initiatives in Rwanda, an LDC. The study explores the status of these elements as of and up to March 2017. The qualitative case study methodology used for this study involved data collection by means of documents and interviews with key managers from central government organisations, from a private company, and from local government service clerks. Template analysis was used as a method for data analysis. Even though the number of online services for citizens, businesses, and other agencies is growing rapidly and easy payment of service fees is available, a number of organisational issues were identified. These include the lack of a clear plan of ‘to-be’ service processes and a corresponding change management strategy. Service re-design was taking place very much ad hoc. There were also unclear systematic organisational learning mechanisms and unclear operational goals in the local government. Addressing these issues would contribute towards improving the implementation of one-stop e-government and its corresponding services in such a context. The paper contributes to research by providing insights into organisational issues in a country currently in an early stage of e-government development. For Rwandan e-government professionals, the paper suggests a way forward. It also helps decision makers in Rwanda and similar countries undertaking one-stop initiatives to understand the problem context of actions taken towards IT-driven institutional reform.

Taking the case of the “one‐stop” e‐government initiative in Rwanda, the present study aims to find out how the “one‐stop” e‐government initiative is monitored at different government levels and stages and the extent to which the initiative is monitored. Furthermore, the study also aims to identify potential areas for improvement in the monitoring process. An exploratory qualitative study was undertaken in Rwandana gencies. The findings show that the monitoring of the process of implementing and improving one‐stop e‐government is partly formal at central government level and informal at local government level. Furthermore, the focus of the monitoring at the stage of use and maintenance leans more towards the benefits of end users as service consumers than those of the service providers. Incorporating formal methodological approaches at local government level and in all stages of the implementation and improvement process at central government level, as well as paying increased attention to back‐end process performance aspects, could introduce additional improvements into the monitoring practice and, in turn, increase project benefits.

Background: Failures in e-government projects to deliver expected results are frequent in the context of developing countries. These are partly attributed to the lack of balanced attention to both technical and social aspects in the implementation. However, there has been limited research on these aspects in the least Developed Countries.

Objectives: Taking a socio-technical perspective, this study aims at exploring the extent of changes and effects in the implementation of e-government service-oriented initiatives in Rwanda, one of the Least Developed Countries.

Methods/Approach: An empirical investigation was conducted, via interviews at 8 agencies during the period from January 2017 to May 2018. This involved two case projects, an Enterprise Content Management System and a One-Stop e-government system. Furthermore, government documents and online material were analyzed.

Results: A number of changes in technology, processes and people aspects were faced in both projects. However, those changes are coupled with secondary effects; there is a need for a better fit between technical systems and social systems of organizations implementing e-government; a larger gap was identified in the first case project.

Conclusions: Addressing the issues as a socio-technical system would contribute to improved work systems of agencies and better services.

Background: EHR systems are widely used in hospitals and primary care centres but it is usually difficult to share information and to collect patient data for clinical research. This is partly due to the different proprietary information models and inconsistent data quality. Our objective was to provide a more flexible solution enabling the clinicians to define which data to be recorded and shared for both routine documentation and clinical studies. The data should be possible to reuse through a common set of variable definitions providing a consistent nomenclature and validation of data. Another objective was that the templates used for the data entry and presentation should be possible to use in combination with the existing EHR systems.

Methods: We have designed and developed a template based system (called Julius) that was integrated with existing EHR systems. The system is driven by the medical domain knowledge defined by clinicians in the form of templates and variable definitions stored in a common data repository. The system architecture consists of three layers. The presentation layer is purely web-based, which facilitates integration with existing EHR products. The domain layer consists of the template design system, a variable/clinical concept definition system, the transformation and validation logic all implemented in Java. The data source layer utilizes an object relational mapping tool and a relational database.

Results: The Julius system has been implemented, tested and deployed to three health care units in Stockholm, Sweden. The initial responses from the pilot users were positive. The template system facilitates patient data collection in many ways. The experience of using the template system suggests that enabling the clinicians to be in control of the system, is a good way to add supplementary functionality to the present EHR systems.

Conclusion: The approach of the template system in combination with various local EHR systems can facilitate the sharing and reuse of validated clinical information from different health care units. However, future system developments for these purposes should consider using the openEHR/CEN models with shareable archetypes.

With the introduction of EHR two-level modelling and archetype methodologies pioneered by openEHR and standardized by CEN/ISO, we are one step closer to semantic interoperability and future-proof adaptive healthcare information systems. Along with the opportunities, there are also challenges. Archetypes provide the full semantics of EHR data explicitly to surrounding systems in a platform-independent way, yet it is up to the receiving system to interpret the semantics and process the data accordingly. In this paper we propose a design of an archetype-based platform-independent testing framework for validating implementations of the openEHR archetype formalism as a means of improving quality and interoperability of EHRs.

The openEHR foundation has developed an innovative design for interoperable and future-proof Electronic Health Record (EHR) systems based on a dual model approach with a stable reference information model complemented by archetypes for specific clinical purposes.A team from Sweden has implemented all the stable specifications in the Java programming language and donated the source code to the openEHR foundation. It was adopted as the openEHR Java Reference Implementation in March 2005 and released under open source licenses. This encourages early EHR implementation projects around the world and a number of groups have already started to use this code. The early Java implementation experience has also led to the publication of the openEHR Java Implementation Technology Specification. A number of design changes to the specifications and important minor corrections have been directly initiated by the implementation project over the last two years. The Java Implementation has been important for the validation and improvement of the openEHR design specifications and provides building blocks for future EHR systems.

BACKGROUND: Exchange of Electronic Health Record (EHR) data between systems from different suppliers is a major challenge. EHR communication based on archetype methodology has been developed by openEHR and CEN/ISO. The experience of using archetypes in deployed EHR systems is quite limited today. Currently deployed EHR systems with large user bases have their own proprietary way of representing clinical content using various models. This study was designed to investigate the feasibility of representing EHR content models from a regional EHR system as openEHR archetypes and inversely to convert archetypes to the proprietary format.

METHODS: The openEHR EHR Reference Model (RM) and Archetype Model (AM) specifications were used. The template model of the Cambio COSMIC, a regional EHR product from Sweden, was analyzed and compared to the openEHR RM and AM. This study was focused on the convertibility of the EHR semantic models. A semantic mapping between the openEHR RM/AM and the COSMIC template model was produced and used as the basis for developing prototype software that performs automated bi-directional conversion between openEHR archetypes and COSMIC templates.

RESULTS: Automated bi-directional conversion between openEHR archetype format and COSMIC template format has been achieved. Several archetypes from the openEHR Clinical Knowledge Repository have been imported into COSMIC, preserving most of the structural and terminology related constraints. COSMIC templates from a large regional installation were successfully converted into the openEHR archetype format. The conversion from the COSMIC templates into archetype format preserves nearly all structural and semantic definitions of the original content models. A strategy of gradually adding archetype support to legacy EHR systems was formulated in order to allow sharing of clinical content models defined using different formats.

CONCLUSION: The openEHR RM and AM are expressive enough to represent the existing clinical content models from the template based EHR system tested and legacy content models can automatically be converted to archetype format for sharing of knowledge. With some limitations, internationally available archetypes could be converted to the legacy EHR models. Archetype support can be added to legacy EHR systems in an incremental way allowing a migration path to interoperability based on standards.

Clinical research is on the threshold of a new era in which electronic health records (EHRs) are gaining an important novel supporting role. Whilst EHRs used for routine clinical care have some limitations at present, as discussed in this review, new improved systems and emerging research infrastructures are being developed to ensure that EHRs can be used for secondary purposes such as clinical research, including the design and execution of clinical trials for new medicines. EHR systems should be able to exchange information through the use of recently published international standards for their interoperability and clinically validated information structures (such as archetypes and international health terminologies), to ensure consistent and more complete recording and sharing of data for various patient groups. Such systems will counteract the obstacles of differing clinical languages and styles of documentation as well as the recognized incompleteness of routine records. Here, we discuss some of the legal and ethical concerns of clinical research data reuse and technical security measures that can enable such research while protecting privacy. In the emerging research landscape, cooperation infrastructures are being built where research projects can utilize the availability of patient data from federated EHR systems from many different sites, as well as in international multilingual settings. Amongst several initiatives described, the EHR4CR project offers a promising method for clinical research. One of the first achievements of this project was the development of a protocol feasibility prototype which is used for finding patients eligible for clinical trials from multiple sources.

BACKGROUND: Intimate partner violence (IPV) is a major public health problem. Electronic empowerment has several positive impacts on health. No study has examined whether electronic empowerment prevents intimate partner violence. Economic empowerment has positive and negative effects on IPV victimization. The current study was conducted to investigate whether economic and electronic empowerment of women act as protective factors against IPV in India.

METHODS: A national representative sample of 66,013 ever-married women from 36 member states and union territories of India has been used from the National Family Health Survey 2015 to 2016. Emotional, physical and sexual violence against women by husbands were target variables. We used bivariate and multivariate analyses. RESULTS: The prevalence of emotional violence was 13%, physical violence was 28% and sexual violence was 7%. IPV against women was as follows: The prevalence was higher among women living in rural areas, belonging to Hindu religion and those belonging to Scheduled Castes. Higher education and higher socio-economic status were found to be protective factors against IPV. The prevalence of IPV was higher among the working women, among those having knowledge of business loans for women and the recipients of such business loans. Exposure to media was found to reduce IPV. The women who used mobile phones and SMS facility experienced less violence.

CONCLUSION: Economic independence of women was found to be a risk factor for IPV in India, whereas electronic empowerment was a protective factor. In the Indian context, policymakers should make use of mobile phones and support SMS use in the IPV awareness programs. Women empowerment, combined with gender equity, can reduce the prevalence of violence against women.

BACKGROUND: C3-Cloud is an integrated care ICT infrastructure offering seamless patient-centered approach to managing multimorbidity, deployed in three European pilot sites. Challenge: The digital delivery of best practice guidelines unified for multimorbidity, customized to local practice, offering the capability to improve patient personalization and benefit.

METHOD: C3-Cloud has adopted a co-production approach to developing unified multimorbidity guidelines, by collating and reconciling best practice guidelines for each condition. Clinical and technical teams at pilot sites and the C3-Cloud consortium worked in tandem to create the specification and technical implementation.

RESULTS: C3-Cloud offers CDSS for diabetes, renal failure, depression and congenital heart failure, with over 300 rules and checks that deliver four best practice guidelines in parallel, customized for each pilot site.

CONCLUSIONS: The process provided a traceable, maintainable and audited digitally delivered collated and reconciled guidelines.

Ge Socialstyrelsen ett nationellt uppdrag att beställa och ersätta vårdgivare av digital vård, föreslår en grupp forskare med anledning av covid-19.

A comprehensive computerized questionnaire was developed to obtain the anamnesis of patients seeking contact with a physician for any type of new problem. The purpose of this pilot study was to investigate ifa structured questionnaire filled out by the patient and complementing an interview at the physician’s office would contribute to a better quality of the total anamnesis and/or lead to savings in time at the visit. The results encourage further developments in this direction. The potential uses proposed are, in addition to being used to improve a visit, the correct assessment of the history for prioritization and scheduling of visits and in some situations, the anamnesis obtained over the net may be the basis for medical advice without a visit. This study emphasizes the great improvement of information captured by this type of questionnaire based on medical knowledge about associated symptoms and relevant questions depending on the problem presented compared to the results obtained by a simple open question used in many e-health services today.

Older center dot age is associated with an increased accumulation of multiple chronic conditions. The clinical management of patients suffering from multiple chronic conditions is very complex, disconnected and time-consuming with the traditional care settings. Integrated care is a means to address the growing demand for improved patient experience and health outcomes of multimorbid and long-term care patients. Care planning is a prevalent approach of integrated care, where the aim is to deliver more personalized and targeted care creating shared care plans by dearly articulating the role of each provider and patient in the care process. In this paper, we present a method and corresponding implementation of a semi-automatic care plan management tool, integrated with clinical decision support services which can seamlessly access and assess the electronic health records (EHRs) of the patient in comparison with evidence based clinical guidelines to suggest personalized recommendations for goals and interventions to be added to the individualized care plans. We also report the results of usability studies carried out in four pilot sites by patients and clinicians.

The paper describes a mobile information system to collect patient information for anaesthesia quality control. In this system we use handheld computers, to collect patient data at the bedside with a daily synchronization of the data of the anaesthesiologist's handheld with the anaesthesia database center, later used for quality control analysis. Further, we design mobile clinical guidelines to be used on the same handhelds.

This paper describes a mobile information system to collect patient information for anesthesia quality control. In this system, a mobile database program was designed for use on handheld computers (Pocket PC). This program is used to collect patient data at the bedside on the handhelds, with a daily synchronization of the data between the anaesthesiologists' handhelds with the anaesthesia database. All collected data are later used for quality control analysis. Furthermore, clinical guidelines will be included on these same handhelds. During the pilot phase, data from a sample set of about 300 patients were incorporated. The processes and interfaces of the system are presented in the paper. The current mobile database system has been designed to replace the original paper-based data collection system. The individual anaesthesiologist's handheld synchronizes patient data daily with anaesthesia database center. This information database is analyzed and used not only to give feedback to the individual doctor or center, but also to review the use of the guidelines provided and the results of their utilization.

OBJECTIVE: The current understanding of the breadth of individual differences in how eHealth technologies are perceived as useful for different purposes is incomprehensive. The aim/purpose of the study is to improve the understanding of diverse perceptions of the usefulness of technologies by exploring older adults' use of their patient-accessible electronic health records (PAEHRs).

METHODS: The study applies and extends Affordance Theory based on an empirical analysis of data from the NORDeHEALTH 2022 Patient Survey on attitudes toward PAEHR in Norway, Sweden, Finland, and Estonia. Responses from 3964 participants in Sweden, aged 65 + years were analysed. Data included demographics and agreement ratings to reasons for using PAEHR. To analyse variation in the reasons for using PAEHR, group comparisons were conducted based on gender (male/female), age group (65-74, 75-84 and 85+) and earlier encouragement to use PAEHR.

RESULTS: Overall, the findings suggest that PAEHRs have multiple parallel affordance trajectories and affordance potencies that actualise differently depending on needs. The top reasons, pointing to both orientational and goal-oriented affordances for using PAEHR, were improving understanding of health issues, getting an overview of medical history/treatment and ensuring understanding of what the doctor said. Men reported more often sharing information with relatives or friends as a reason to access PAEHR. Women were more inclined, albeit similarly to men less frequently, to read their PAEHR for detecting errors. Age had little influence on reasons for using PAEHR.

CONCLUSIONS: The study applies and extends Affordance Theory in the context of older adults' PAEHR use based on findings from the largest national investigation of reasons for older users to access PAEHR in Sweden demonstrating the applicability of the theory in improving the understanding of the diversity of individual perceptions on eHealth technologies.

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.

The Nordic countries are forerunners in online record access (ORA) which has now become widespread. The importance of accessible and structured health data has also been highlighted by policymakers internationally. To ensure the full realization of ORA’spotential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, technical, 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, and introduce a Nordic-led research project that carries out the first of its kind, large-scale international investigation of patients’ ORA; NORDeHEALTH. We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records (EHRs). This will have implications within Europe and globally as it will further extend the boundaries for accessing and using EHRs for primary and secondary data use. Research such as that led by the NORDeHEALTH project is essential in guiding the design and implementation of solutions to meet the requirements of the EHDS proposal. Further international collaboration and research are needed to ensure that socio-technical and contextual factors are considered to ensure successful and secure implementation.

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.

Computer support for health care started in Sweden in the mid-1960s, with a series of pilot tests using clinical records at the Karolinska Hospital. This had very little impact in health care due to its limited volume and scope. In addition, the first automation of chemistry laboratories that created many benefits in the form of increased efficiency from the early 1970s, rapid results delivery and the possibilities of quality control also occurred in the mid-1960s. The 1970s and first part of the 1980s saw the independent development of several patient administration systems, based on central mainframes in the counties, as well as a large number of dumb terminals in the hospitals and later also in the outpatient clinics. From the early 1990s, we saw an explosion of primary care electronic health records with twenty-seven different products in 1995.

BACKGROUND: Empowerment of patients is often an explicit goal of various information and communications technology (ICT) (electronic, digital) interventions where the patients themselves use ICT tools via the internet. Although several models of empowerment exist, a comprehensive and pragmatic framework is lacking for the development of such interventions.

OBJECTIVE: This study proposes a framework for digital interventions aiming to empower patients that includes a methodology that links objectives, strategies, and evaluation.

METHODS: This study is based on a literature review and iterated expert discussions including a focus group to formulate the proposed model. Our model is based on a review of various models of empowerment and models of technology intervention.

RESULTS: Our framework includes the core characteristics of the empowerment concept (control, psychological coping, self-efficacy, understanding, legitimacy, and support) as well as a set of empowerment consequences: expressed patient perceptions, behavior, clinical outcomes, and health systems effects. The framework for designing interventions includes strategies to achieve empowerment goals using different ICT services. Finally, the intervention model can be used to define project evaluations where the aim is to demonstrate empowerment. The study also included example indicators and associated measurement instruments.

CONCLUSIONS: This framework, which includes definitions, can be useful for the design and evaluation of digital interventions targeting patient empowerment and assist in the development of methods to measure results in this dimension. Further evaluation in the form of interventional studies will be needed to assess the generalizability of the model.

BACKGROUND: Parkinson disease (PD) is a chronic degenerative disorder that causes progressive neurological deterioration with profound effects on the affected individual's quality of life. Therefore, there is an urgent need to improve patient empowerment and clinical decision support in PD care. Home-based disease monitoring is an emerging information technology with the potential to transform the care of patients with chronic illnesses. Its acceptance and role in PD care need to be elucidated both among patients and caregivers.

OBJECTIVE: Our main objective was to develop a novel home-based monitoring system (named EMPARK) with patient and clinician interface to improve patient empowerment and clinical care in PD.

METHODS: We used elements of design science research and user-centered design for requirement elicitation and subsequent information and communications technology (ICT) development. Functionalities of the interfaces were the subject of user-centric multistep evaluation complemented by semantic analysis of the recorded end-user reactions. The ICT structure of EMPARK was evaluated using the ICT for patient empowerment model.

RESULTS: Software and hardware system architecture for the collection and calculation of relevant parameters of disease management via home monitoring were established. Here, we describe the patient interface and the functional characteristics and evaluation of a novel clinician interface. In accordance with our previous findings with regard to the patient interface, our current results indicate an overall high utility and user acceptance of the clinician interface. Special characteristics of EMPARK in key areas of interest emerged from end-user evaluations, with clear potential for future system development and deployment in daily clinical practice. Evaluation through the principles of ICT for patient empowerment model, along with prior findings from patient interface evaluation, suggests that EMPARK has the potential to empower patients with PD.

CONCLUSIONS: The EMPARK system is a novel home monitoring system for providing patients with PD and the care team with feedback on longitudinal disease activities. User-centric development and evaluation of the system indicated high user acceptance and usability. The EMPARK infrastructure would empower patients and could be used for future applications in daily care and research.

Empowerment of patients is today often an explicit goal of various ICT interventions where the patients themselves use ICT tools, often via the internet. This study is proposing a framework model for ICT interventions aiming to empower patients. Our new model includes different aspects of the Empowerment concept, general possible strategies to achieve Empowerment using different ICT services. Finally, the ICT services and the underlying strategic model can be used to define evaluations of such interventions where the aim is to demonstrate Empowerment. Our model is based on a review of various general models of Empowerment and the Behavioral Intervention Technology Model (BIT). The implications of our model are discussed using two case studies projects, the C3-Cloud EU project about empowering patients with 4 chronic diseases and the EMPARK project about Internet-of-Things sensors based real time feedback to Parkinson patients.

Objective: This study aims to assess the effects of patient-directed feedback from remote symptom, medication, and disease activity monitoring on patient empowerment and treatment in Parkinson’s disease (PD).

Background: There is a need to empower patients with PD to be able to understand better and control their disease using prescribed medication and following recommendations on lifestyle. The research project EMPARK will develop an Internet of Things system of sensors, mobile devices to deliver real-time, 24/7 patient symptom information with the primary goal to support PD patients empowerment and better understanding of their disease. The system will be deployed in patient homes to continuously measure movements, time-in-bed and drug delivery from a micro-dose levodopa system. Subjective symptom scoring, time of meals and physical activities will be reported by the patients via a smartphone application. Interfaces for patients and clinicians are being developed based on the user center design methodology to ensure maximal user acceptance. 

Methods: This is a randomized controlled trial where 30 PD patients from 2 university clinics in Sweden will be randomized to receive (intervention group) or not (control group) continuous feedback from the results of the EMPARK home monitoring for 2 weeks. Disease-specific (UPDRS, PDQ-39), Quality of Life (QoL) (modified EuroQoL EQ-5D) and empowerment questionnaires will be collected prior and after the intervention. The correlation of technology-based objective and patient-reported subjective parameters will be assessed in both groups. Interviews will be conducted with the clinicians and observations will be made about the patient-clinician interaction to assess the potential treatment benefits of the intervention.

Results: Preliminary results from workshops with patients and clinicians show potential to improve patient empowerment and disease control among patients. Completion of the trial will show the degree of patient empowerment, individualized treatment, and patientclinician interactions.

Conclusions: Raising patients’ awareness about disease activity and home medication is possible among PD patients by providing them with feedback from the results of a home monitoring system. This randomized, controlled trial aims to provide evidence that this approach leads to improved patient empowerment and treatment results.

Electronic health records (EHR) are continuously evolving to better meet user needs, but the process is complicated by healthcare professionals and patients often disagreeing on priority areas of development. While this may be due to differences between professional and personal experiences, little is known whether specialist healthcare knowledge also affects user needs when using EHRs as patients. To investigate this, we analysed the responses of patient users in Sweden from the NORDeHEALTH 2022 Patient Survey. In the survey, respondents indicated whether they had healthcare education, and rated how useful various EHR information types and functions are. Average ratings were comparable between the two user groups, but significant differences were observed for information types and functions. Those without healthcare education rated the ability to point out errors as most useful, while those with healthcare education - the ability to contribute health information. The findings suggest healthcare education can influence users' EHR preferences.

Healthcare policies in many countries, in the European Union and of the United Nations stress the importance of using information and communications technology to achieve the goals of improving health for all while controlling accelerating costs. This paper reviews the major areas where standards actions are required on a national, European and global level.

Resistens mot antibiotikablir snabbt ett allt större problemäven om vi hittills i Sverigevarit relativt förskonadejämfört med många andraländer.Det finns ett alternativ, alltförlänge nästan bortglömt,som är värt mycket störreuppmärksamhet och nyaprövningar.Det är att använda bakteriofager,virus som oftast mycketspecifikt och effektivt kanlysera många av våra besvärligastepatogena bakterier.Terapeutiska effekter har påvisatsi ett antal olika situationerända sedan metodenförst lanserades av fransmannenFélix d’Hérelle 1920,långt före sulfan och penicillinet.

Managing prescriptions for medication, using ICT support, started in the 1970s with the computerization of the pharmacy branch offices where local systems registered handwritten prescriptions and to print labels. In 1984, the first online prescribing started with physicians connected to their local pharmacy system in a pilot test. Then in 1987, the first pilot test started with an off-line system in which PC-based prescriber support systems transferred data to patient-held smart cards that were taken to the pharmacy. In the 1990s, we had the first use of messaging using EDIFACT syntax for prescriptions. These had a relatively small volume until 2000, when an XML version of a European standard based on object-oriented modeling became popular and made electronic prescribing the normal practice, which meant important quality gains.

Medicinsk informatik handlar om kunskapsinnehållet i vårdens IT-system. Boken beskriver hur digitaliseringens kan stödja kvalitet, forskning, utveckling, beslutsfattande, resursutnyttjande m.m. Syftet är att ge vårdprofessionen förståelse för digitaliseringens möjligheter och begränsningar så att de bättre kan ställa krav på och utforma IT-system som uppfyller kraven på god och säker vård. Ett bra IT-stöd ger vårdprofessionen mer tid till patientomhändertagande och läkekonst.

Boken är lämplig som kurslitteratur inom både grund- och avancerad utbildning i informatik, bland annat för läkare, sjuksköterskor och andra vårdprofessioner. Innehållet är även värdefullt för de yrkesgrupper som arbetar med vårdens digitalisering.

The European standardisation of health informatics in CEN/TC 251 started in 1990 with the now twenty national standards bodies as members and a political mandate from the European Union and EFTA. The start of the international work in ISO/TC 215 has been welcomed by Europe and there is a lot of co-operation where European pre-standards have often been the basis for the start of international standards work, particularly in the area of medical device communication and for health cards. CEN and ISO also collaborate with other bodies in the field such as DICOM for imaging, IEEE for devices and the US based HL7 organisation for message development. It is important to find the right level of standards work for different aspects. The European CEN work will be maintained for issues like the electronic health record, some security aspects and medication related communication where there are common views and legislation makes European consensus necessary and achievable. The device market on the other hand requires global standards. In addition to multinational co-operation, it is important with a national strategy for the use of standards and adaptation and promotion of specific profiles to achieve interoperability in the still mainly national health systems.

This paper describes a new European and International standard, ISO 13119 Health informatics - Clinical knowledge resources - Metadata that is intended for both health professionals and patients/citizens. This standard aims to facilitate two issues: 1) How to find relevant documents that are appropriate for the reader and situation and 2) How to ensure that the found knowledge documents have a sufficient or at least declared quality management? Example of use is provided from the European Centre for Disease Control and Prevention.

Expanding use of information technology in health case, both within and between the institutions, leads to additional security demands. The role is discussed that can be played by smart cards for healthcare professionals.

This paper is inspired by the global debate emerging after the release by Edward Snowden in 2013 of many documents describing the policy and practice of the US National Security Agency (NSA) and some of its collaborating partners in other countries, GCHQ in the UK and FRA in Sweden. This paper gives five examples from 1989-1995 on how security experts from Norway, Denmark and Sweden were put under pressure by actions from NATO and various security agencies during their work for the European standardization bodies, CEN and ETSI. Even after the cold war essentially ended by the fall of the Berlin Wall in 1989, the use of cryptographic techniques, today completely legal and an essential part of the information society, was highly sensitive at least through 1996. The security experts were put under strong pressure to favour weak encryption algorithms that would facilitate eavesdropping by the national security agencies.

Objectives: This review article aims to highlight the importance of standards for effective communication and provides an overview of international standardization activities.

Methods: This article is based on the experience of the author of European standardization in CEN, which he leads, and the global work of ISO, where he is leading the security working group, and an overview of the work of DICOM, IEEE and HL7, partly using their web presentations.

Results: Health communication is highly dependent of the general development of information technology with standards coming from ISQ/IEC ITC1, ITU and several other organizations e.g. IETE, the World Wide Web consortium and Open group. A number of standardization initiatives have been in progress for more than ten years with the aim to facilitate different aspects of the exchange of health information. Electronic record architecture, Message structures, Concept representation, Device communication including imaging and Security are the main areas.

Conclusions: Important results have been achieved, and in some fields and parts of the worked, standards are widely used today. Unfortunately, we are still facing the fact that most healthcare information systems cannot exchange information with all systems for which this would be desired. Either the existing standards are not sufficiently implemented, or the required standards and necessary national implementation guidelines do not yet exist. This causes unacceptable risks to patients, inefficient use of healthcare resources, and sub optimal development of medical knowledge. Fortunately, the different bodies are now largely co-operating to achieve global consensus.

A national patient portal for secure communication between the patients/citizens and primary care (Mina vårdkontakter) is available in Sweden. This system was used in a pilot project in the Stockholm County where patients were invited to prepare the visit to their physician for the discussion on the need for prolonged sickness leave by filling out a web based questionnaire on their current health status and working conditions. The opinions of the patients and their primary care physicians about the system were analyzed with positive feedback.

The translation and localization of SNOMED CT (Systematized Nomenclature of Medicine - Clinical Terms) have been initiated in a few countries. In Sweden, we conducted the first evaluation of this terminology in a project called REFTERM in which we also developed a software tool which could handle a large scale translation with a number of translators and reviewers in a web-based environment. The system makes use of existing authorized English-Swedish translations of medical terminologies such as ICD-10. The paper discusses possible strategies for a national project to translate and adapt this terminology.

In many countries today, an important challenge for health care is the fact that the population is mixed as regards cultural background and not the least with regard to preferred language. In our country Sweden almost 20% of the population has some connection to another country and many patients seeking health care do not have sufficient mastering of the dominant Swedish language to get optimal care. We propose in this study a set of eHealth services that could be implemented within a country and in multinational co-operation to deal with some of these issues in an effective way which both empowers the citizens, improves patient safety and at the same time may offer cost savings for the publicly financed health care systems in the countries of the European Union. The basic idea is to use a set of people-people communication strategies using ICT tools combined with semantic tools for information sharing and conversion. This requires new and challenging organizational contexts.