BACKGROUND While a large number of surveys have been conducted on patients accessing their own health records in recent years, there is a limited number 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 To investigate the socio-demographic characteristics and experiences of patients who access their electronic health records (EHRs) through the national patient portals in Norway, Sweden, Finland, and Estonia. METHODS A cross-sectional web-based survey via national online health portals. Target participants were patients that accessed the national patient portals at the start of 2022, and were aged 15 years and above. The survey included a mixture of close-ended and free-text questions about participant socio-demographics, usability, experiences with healthcare and the EHR, reasons for reading health records online, experience with errors, omissions and offence, opinions about security and privacy, as well as the usefulness of portal functions. Here, we summarised data on participant demographics, past experience with healthcare and the patient portal through descriptive statistics. RESULTS 29,334 users completed the survey, of which 9,503 (32.40%) portal users were from Norway, 13,008 (44.35%) from Sweden, 4,713 (16.07%) from Finland and 2,104 (7.17%) from Estonia. National samples were comparable according to reported gender, with two-thirds identifying as women. Age distributions were similar across the countries, but Finland had more older users while Estonia had more younger. The highest attained education and presence of healthcare education varied between the national samples. In all four countries, patients most commonly rated their health as ‘fair’ (38.48%). In Estonia, participants were more often inclined to rate their health positively, while Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, the majority of patients received some care in the last two years (86.55%). Mental healthcare was more common (21.24%) than oncological (12.52%). Overall, the majority of patients had accessed their health record ‘2 to 9 times’ (39.40%), with the most frequent users residing in Sweden, where one-third of patients accessed it ‘more than 20 times’ (35.14%). CONCLUSIONS This is the first large-scale international survey to compare patient users’ socio-demographics and experiences with accessing their EHRs. While 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 investigating patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined datasets from the NORDeHEALTH 2022 Patient Survey. CLINICALTRIAL Not applicable.
UNSTRUCTURED 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 Patient portals provide patients not only with access to electronic health records (EHRs), but also other functionalities, such as prescription renewals. Patient portals can improve patients’ self-management, engagement with health care professionals (HCPs), and care processes. These benefits, however, depend on patients’ willingness to use patient portals and, ultimately, their experiences with the usefulness and ease of use of the portals. OBJECTIVE This study aimed to investigate patients’ positive and negative experiences with the Finnish national patient portal My Kanta and the relation of their experiences with perceived usability. METHODS Data were collected through a web-based survey of the My Kanta patient portal’s logged-in patient users in Finland from January to February 2022. The web-based survey included questions about background information and perceived usability, which was used to calculate approximations of the System Usability Scale (SUS). Open-ended questions asked the patients about their positive and negative experiences with the patient portal. The statistical analysis included multivariate regression, and the experiences were analyzed using inductive content analysis. RESULTS A total of 4719 patients responded (response rate 0.37% (4719/1,262,708)) to the survey. The patient portal’s usability was rated as good, with a mean SUS score of 74.3. Reporting positive and negative experiences explained 23% of the variation in perceived usability. Provided information or lack of information were the most common positive and negative experiences. Furthermore, specific functionalities, such as prescription renewal and the easiness of the patient portal, were often mentioned as positive experiences. Similarly, difficulties in finding information or with specific functionalities were causes of negative experiences. The patients also mentioned negative emotions, such as anger and frustration, as part of their negative experiences. CONCLUSIONS Reporting positive experiences related to better perceived usability, and reporting negative experiences related to worse perceived usability. The results suggest that positive and negative experiences provide relevant information about perceived usability. Patients’ experiences offer detailed knowledge about the benefits and challenges of improving the patient portal’s usability. Usability should be improved so that patients receive information easily and quickly. Respondents would also appreciate interactive features in the patient portal.
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