To Örebro University

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.

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.

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.

Background: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland,Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Althoughsociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depthcross-country analysis has not been developed.

Objective: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a frameworkfor sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents thedevelopment of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use.

Methods: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series ofworkshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were representedin the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questionsrelated to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the4 participating countries, and the project participants researched various national sources to provide the relevant data for thecomparisons in the 10 sociotechnical dimensions.

Results: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from featuresand functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steeringof health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared withpatients; human-computer interface; people; workflow and communication; the health care organization's internal policies,procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care systemcontext. The dimensions added during the study mostly concerned background information needed for cross-country comparisonsin particular. Several similarities were identified among the compared countries, especially regarding hardware and softwarecomputing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHRautomatically. Most of the differences could be identified in the health care system contextdimension. One important differenceconcerned the governing of information and communications technology development, where different levels (state, region, andmunicipality) were responsible in different countries.

Conclusions: This is the first large-scale international sociotechnical analysis of services for patients to access their electronichealth records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis wasdeveloped and is presented to enable comparison studies in other national contexts to enable future implementations and evaluationsof PAEHRs.

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.

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.

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.

Valid assessment of pain is essential in daily clinical practice to enhance the quality of care for the patients and to avoid the risk of addiction to strong analgesics. The aim of this paper is to find a method for objective and quantitative evaluation of pain using multiple physiological markers. Data was obtained from healthy volunteers exposed to thermal and ischemic stimuli. Twelve subjects were recruited and their physiological data including skin conductance, heart rate, and skin temperature were collected via a wrist-worn sensor together with their selfreported pain on a visual analogue scale (VAS). Statistically significant differences (p< 0.01) were found between physiological scores obtained with the wearable sensor before and during the thermal test. Test-retest reliability of sensor-based measures was good during the thermal test with intraclass correlation coefficients ranging from 0.22 to 0.89. These results support the idea that a multi-sensor wearable device can objectively measure physiological reactions in the subjects due to experimentally induced pain, which could be used for daily clinical practice and as an endpoint in clinical studies. Nevertheless, the results indicate a need for further investigation of the method in real-life pain settings.

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.