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.

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.

Do electronic and economic empowerment protect women from intimate partner violence (IPV) in India?

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.

An Integrated Care Platform System (C3-Cloud) for Care Planning, Decision Support, and Empowerment of Patients With Multimorbidity: Protocol for a Technology Trial.

BACKGROUND: There is an increasing need to organize the care around the patient and not the disease, while considering the complex realities of multiple physical and psychosocial conditions, and polypharmacy. Integrated patient-centered care delivery platforms have been developed for both patients and clinicians. These platforms could provide a promising way to achieve a collaborative environment that improves the provision of integrated care for patients via enhanced information and communication technology solutions for semiautomated clinical decision support. OBJECTIVE: The Collaborative Care and Cure Cloud project (C3-Cloud) has developed 2 collaborative computer platforms for patients and members of the multidisciplinary team (MDT) and deployed these in 3 different European settings. The objective of this study is to pilot test the platforms and evaluate their impact on patients with 2 or more chronic conditions (diabetes mellitus type 2, heart failure, kidney failure, depression), their informal caregivers, health care professionals, and, to some extent, health care systems. METHODS: This paper describes the protocol for conducting an evaluation of user experience, acceptability, and usefulness of the platforms. For this, 2 "testing and evaluation" phases have been defined, involving multiple qualitative methods (focus groups and surveys) and advanced impact modeling (predictive modeling and cost-benefit analysis). Patients and health care professionals were identified and recruited from 3 partnering regions in Spain, Sweden, and the United Kingdom via electronic health record screening. RESULTS: The technology trial in this 4-year funded project (2016-2020) concluded in April 2020. The pilot technology trial for evaluation phases 3 and 4 was launched in November 2019 and carried out until April 2020. Data collection for these phases is completed with promising results on platform acceptance and socioeconomic impact. We believe that the phased, iterative approach taken is useful as it involves relevant stakeholders at crucial stages in the platform development and allows for a sound user acceptance assessment of the final product. CONCLUSIONS: Patients with multiple chronic conditions often experience shortcomings in the care they receive. It is hoped that personalized care plan platforms for patients and collaboration platforms for members of MDTs can help tackle the specific challenges of clinical guideline reconciliation for patients with multimorbidity and improve the management of polypharmacy. The initial evaluative phases have indicated promising results of platform usability. Results of phases 3 and 4 were methodologically useful, yet limited due to the COVID-19 pandemic. TRIAL REGISTRATION: ClinicalTrials.gov NCT03834207; https://clinicaltrials.gov/ct2/show/NCT03834207. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/21994.

Localisation, Personalisation and Delivery of Best Practice Guidelines on an Integrated Care and Cure Cloud Architecture: The C3-Cloud Approach to Managing Multimorbidity.

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.

User-Centered Design of the C3-Cloud Platform for Elderly with Multiple Diseases - Functional Requirements and Application Testing.

The number of patients with multimorbidity has been steadily increasing in the modern aging societies. The European C3-Cloud project provides a multidisciplinary and patient-centered "Collaborative Care and Cure-system" for the management of elderly with multimorbidity, enabling continuous coordination of care activities between multidisciplinary care teams (MDTs), patients and informal caregivers (ICG). In this study various components of the infrastructure were tested to fulfill the functional requirements and the entire system was subjected to an early application testing involving different groups of end-users. MDTs from participating European regions were involved in requirement elicitation and test formulation, resulting in 57 questions, distributed via an internet platform to 48 test participants (22 MDTs, 26 patients) from three pilot sites. The results indicate a high level of satisfaction with all components. Early testing also provided feedback for technical improvement of the entire system, and the paper points out useful evaluation methods.

A Collaborative Platform for Management of Chronic Diseases via Guideline-Driven Individualized Care Plans.

Older 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 clearly 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.

Mobile health treatment support intervention for HIV and tuberculosis in Mozambique: Perspectives of patients and healthcare workers.

BACKGROUND: Studies have been conducted in developing countries using SMS to communicate with patients to reduce the number of missed appointments and improve retention in treatment, however; very few have been scaled up. One possible reason for this could be that patients or staff are dissatisfied with the method in some way. This paper reports a study of patients' and healthcare workers' (HCW) views on an mHealth intervention aiming to support retention in antiretroviral therapy (ART) and tuberculosis (TB) treatment in Mozambique. METHODS: The study was conducted at five healthcare centres in Mozambique. Automated SMS health promotions and reminders were sent to patients in a RCT. A total of 141 patients and 40 HCWs were interviewed. Respondents rated usefulness, perceived benefits, ease of use, satisfaction, and risks of the SMS system using a Likert scale questionnaire. A semi-structured interview guide was followed. Interviews were transcribed and thematic analysis was conducted. RESULTS: Both patients and HCW found the SMS system useful and reliable. Most highly rated positive effects were reducing the number of failures to collect medication and avoiding missing appointments. Patients' confidence in the system was high. Most perceived the system to improve communication between health-care provider and patient and assist in education and motivation. The automatic recognition of questions from patients and the provision of appropriate answers (a unique feature of this system) was especially appreciated. A majority would recommend the system to other patients or healthcare centres. Risks also were mentioned, mostly by HCW, of unintentional disclosure of health status in cases where patients use shared phones. CONCLUSIONS: The results suggest that SMS technology for HIV and TB should be used to transmit reminders for appointments, medications, motivational texts, and health education to increase retention in care. Measures must be taken to reduce risks of privacy intrusion, but these are not a main obstacle for scaling up systems of this kind.

Mobile health treatment support intervention for HIV and tuberculosis in Mozambique: perspectives of patients and healthcare workers

Background Studies have been conducted in developing countries using SMS to communicate with patients to reduce the number of missed appointments and improve retention in treatment, however; very few have been scaled up. One possible reason for this could be that patients or staff are dissatisfied with the method in some way. This paper reports a study of patients' and healthcare workers' (HCW) views on an mHealth intervention aiming to support retention in antiretroviral therapy (ART) and tuberculosis (TB) treatment in Mozambique. Methods The study was conducted at five healthcare centres in Mozambique. Automated SMS health promotions and reminders were sent to patients in a RCT. A total of 141 patients and 40 HCWs were interviewed. Respondents rated usefulness, perceived benefits, ease of use, satisfaction, and risks of the SMS system using a Likert scale questionnaire. A semi-structured interview guide was followed. Interviews were transcribed and thematic analysis was conducted. Results Both patients and HCW found the SMS system useful and reliable. Most highly rated positive effects were reducing the number of failures to collect medication and avoiding missing appointments. Patients' confidence in the system was high. Most perceived the system to improve communication between health-care provider and patient and assist in education and motivation. The automatic recognition of questions from patients and the provision of appropriate answers (a unique feature of this system) was especially appreciated. A majority would recommend the system to other patients or healthcare centres. Risks also were mentioned, mostly by HCW, of unintentional disclosure of health status in cases where patients use shared phones. Conclusions The results suggest that SMS technology for HIV and TB should be used to transmit reminders for appointments, medications, motivational texts, and health education to increase retention in care. Measures must be taken to reduce risks of privacy intrusion, but these are not a main obstacle for scaling up systems of this kind.

Mobile health treatment support intervention for HIV andtuberculosis in Mozambique: Perspectives of patients and healthcare workers

Studies have been conducted in developing countries using SMS to communicate with patients to reduce the number of missed appointments and improve retention in treatment, however; very few have been scaled up. One possible reason for this could be that patients or staff are dissatisfied with the method in some way. This paper reports a study of patients' andhealthcare workers' (HCW) views on an mHealth intervention aiming to support retention in antiretroviral therapy (ART) and tuberculosis (TB) treatment in Mozambique. Methods Thestudy wasconducted atfive healthcare centres in Mozambique. Automated SMS health promotions and reminders were sent to patients in a RCT. A total of 141 patients and 40 HCWswereinterviewed. Respondents rated usefulness, perceived benefits, ease of use, satisfaction, and risks of the SMS system using a Likert scale questionnaire. A semi-structured interview guide was followed. Interviews were transcribed and thematic analysis was conducted. Results Both patients and HCWfoundtheSMSsystemusefulandreliable. Most highly rated positive effects were reducing the number of failures to collect medication and avoiding missing appointments. Patients' confidence in the system was high. Most perceived the system to improve communication between health-care provider and patient and assist in education andmotivation. The automatic recognition of questions from patients and the provision of appropriate answers (a unique feature of this system) was especially appreciated. A majority would recommend the system to other patients or healthcare centres. Risks also were mentioned, mostly by HCW, of unintentional disclosure of health status in cases where patients use shared phones. Conclusions Theresults suggest that SMS technology for HIV and TB should be used to transmit reminders for appointments, medications, motivational texts, and health education to increase retention in care. Measures must be taken to reduce risks of privacy intrusion, but these are not a mainobstacle for scaling up systems of this kind.

Smart Glasses--A New Tool in Medicine.

Smart glasses, defined as a computerized communicator with a transparent screen and a video camera, wearable as a pair of glasses, have started to be tested for a variety of health related applications. This poster reviews some of the early experiences and gives a series of proposals for possible uses in medicine with a particular emphasis on medical education.

Patient empowerment in the process of sickness certificates.

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.

Metadata - an international standard for clinical knowledge resources.

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.

Concept Systems and Ontologies: Recommendations for Basic Terminology.

This essay concerns the problems surrounding the use of the term "concept" in current ontology and terminology research. It is based on the constructive dialogue between realist ontology on the one hand and the world of formal standardization of health informatics on the other, but its conclusions are not restricted to the domain of medicine. The term "concept" is one of the most misused even in literature and technical standards which attempt to bring clarity. In this paper we propose to use the term "concept" in the context of producing defined professional terminologies with one specific and consistent meaning which we propose for adoption as the agreed meaning of the term in future terminological research, and specifically in the development of formal terminologies to be used in computer systems. We also discuss and propose new definitions of a set of cognate terms. We describe the relations governing the realm of concepts, and compare these to the richer and more complex set of relations obtaining between entities in the real world. On this basis we also summarize an associated terminology for ontologies as representations of the real world and a partial mapping between the world of concepts and the world of reality.

eHealth tools for patients and professionals in a multicultural world.

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.

Archetype-based conversion of EHR content models: pilot experience with a regional EHR system.

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.

Translation of SNOMED CT - strategies and description of a pilot project.

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.

An archetype-based testing framework.

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.