Saija Simola

Background: Patients’ access to their electronic health record (EHR) supports their participation and satisfaction with care. Despite the benefits, some patients have been upset after reading their EHR. Additionally, health care professionals are concerned that patients, particularly those with mental health conditions, may be offended, and they have expressed a need for further guidelines on how to write EHRs. Experiences among various patient groups are essential to support the relationship between patients and professionals. However, prior studies have often focused on single patient groups or specific clinical contexts, leaving a limited understanding of differences across multiple patient groups. Objective: This study aimed to determine whether certain patient groups are more likely to feel offended while reading their EHRs and which information is perceived as offensive and to provide a comparison across multiple patient groups using a mixed methods approach. Methods: A cross-sectional survey was conducted via the Finnish national patient portal using a web-based patient survey, adopting a mixed methods approach. The survey included multiple-choice and open-ended questions. The total sample comprised 4681 respondents. The survey respondents were placed into 4 patient groups: those who had received care for mental health, cancer, or other conditions and those who had received no care. Associations between the type of care and patients who felt offended were estimated using multivariate binary logistic regression. Inductive content analysis (n=502) was conducted to identify information perceived as offensive in the EHR. Results: The patients who had received mental health care (166/654, 25.4%) or cancer and mental health care (9/39, 23.1%) were more likely to be offended by information in their EHR compared to the other groups (cancer care: 37/375, 9.9%; other conditions care: 383/3316, 11.6%; no care: 22/206, 10.7%; other conditions care: odds ratio 0.37, 95% CI 0.29‐0.46; P <.001; model A). Additionally, female patients, those with bad or very bad health conditions, and patients with bachelor’s or master’s degrees were significantly more likely to feel offended. Errors, the health care professionals’ disrespectful language, and perceived unnecessary information were the most frequently mentioned reasons for being offended. Patients with mental health care reported more often that unnecessary information and professionals’ opinions and word choices were experienced as offensive compared to other patients. Conclusions: This study contributes new knowledge by identifying differences across multiple patient groups. Although a minority of patients felt offended by their EHR, health care professionals should consider that some patients, particularly those who have received mental health care or cancer and mental health care, may be offended by specific information or word choices in their EHRs. To address this, health care professionals should receive education on how to write their notes in a neutral tone and avoid potentially offensive topics. Improving the quality of EHRs could strengthen the relationship between patients and professionals.

Introduction: Patient-accessible electronic health records (PAEHRs) offer benefits, such as supporting self-management and care engagement. However, some patients, particularly those with mental health conditions, might experience negative emotions such as worry when reading unexpected or sensitive information in their PAEHRs. Methods: A web-based survey of 4459 respondents distributed via the Finnish national patient portal included multiple-choice and open-ended questions. Respondents consisted of two patient groups who had received care either for 1) mental health or 2) other conditions. Inductive content analysis was performed to explore the kind of information that was perceived as sensitive in the PAEHR. Associations between sociodemographic factors including the type of care and reporting health information as sensitive were calculated via the multivariable binary logistic regression analysis. Results: Mental health (61.3%), and intimate health (8.3%) were the most frequently mentioned as especially sensitive types of information among respondents, who also stressed that the sensitive nature of the health information depended on the context. Within the mental health information type, therapy or treatment was most often mentioned (3.5%) as sensitive. Respondents who had received mental health care were significantly more likely to perceive certain information as sensitive (53.2%) than other patients (28.8%; Adjusted OR=2.783, 95% CI=[2.333, 3.319], p<0.001). Conclusions: This study delves into the sensitive character of mental health information within PAEHR. The sensitivity of information also depends on the consequences for the patients when data will be used in another context. Documenting sensitive information carefully and safeguarding it is recommended to maintain trust in electronic health records and healthcare.

The role of gender in patient experiences with patient-accessible electronic health records (EHR) remains poorly researched. Using a cross-sectional survey of 27,038 national patient portal users in Norway, Sweden, and Finland, we analysed the association between gender and EHR experiences, and usefulness of EHR functions. We found that women were more frequent EHR users and reported a similar incidence of a positive EHR experience as men. Unlike men, significantly more women recounted a negative EHR experience. When rating EHR functions, usefulness ratings were significantly associated with gender on all items but ‘contact with provider’. Overall, women tended to regard more functions as useful than men. Further EHR development should consider gender in functionality design.

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.

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: Patient portals not only provide patients with access to electronic health records (EHRs) and other digital health services, such as prescription renewals, but they can also improve patients’ self-management, engagement with health care professionals (HCPs), and care processes. However, these benefits 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 the perceived usability of a national patient portal and the relationship of patients’ very positive and very negative experiences with perceived usability. The study was aimed to be the first step in developing an approach for benchmarking the usability of patient portals in different countries. Methods: Data were collected through a web-based survey of the My Kanta patient portal’s logged-in patient users in Finland from January 24, 2022, to February 14, 2022. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale (SUS) score. Open-ended questions asked the patients about their positive and negative experiences with the patient portal. The statistical analysis included multivariate regression, and the experience narratives were analyzed using inductive content analysis. Results: Of the 1,262,708 logged-in patient users, 4719 responded to the survey, giving a response rate of 0.37%. The patient portal’s usability was rated as good, with a mean SUS score of 74.3 (SD 14.0). Reporting a very positive experience with the portal was positively associated with perceived usability (β=.51; P<.001), whereas reporting a very negative experience was negatively associated with perceived usability (β=−1.28; P<.001). These variables explained 23% of the variation in perceived usability. The information provided and a lack of information were the most common positive and negative experiences. Furthermore, specific functionalities, such as prescription renewal and the ease of using the patient portal, were often mentioned as very positive experiences. The patients also mentioned negative emotions, such as anger and frustration, as part of their very negative experiences. Conclusions: The study offers empirical evidence about the significant role of individual experiences when patients are evaluating the usability of patient portals. The results suggest that positive and negative experiences provide relevant information that can be used for improving the patient portal’s usability. Usability should be improved so that patients receive information efficiently, easily, and quickly. Respondents would also appreciate interactive features in the patient portal.

BACKGROUND Patient portals not only provide patients with access to electronic health records (EHRs) and other digital health services, such as prescription renewals, but they can also improve patients’ self-management, engagement with health care professionals (HCPs), and care processes. However, these benefits 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 the perceived usability of a national patient portal and the relationship of patients’ very positive and very negative experiences with perceived usability. The study was aimed to be the first step in developing an approach for benchmarking the usability of patient portals in different countries. METHODS Data were collected through a web-based survey of the My Kanta patient portal’s logged-in patient users in Finland from January 24, 2022, to February 14, 2022. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale (SUS) score. Open-ended questions asked the patients about their positive and negative experiences with the patient portal. The statistical analysis included multivariate regression, and the experience narratives were analyzed using inductive content analysis. RESULTS Of the 1,262,708 logged-in patient users, 4719 responded to the survey, giving a response rate of 0.37%. The patient portal’s usability was rated as good, with a mean SUS score of 74.3 (SD 14.0). Reporting a very positive experience with the portal was positively associated with perceived usability (β=.51; P<.001), whereas reporting a very negative experience was negatively associated with perceived usability (β=−1.28; P<.001). These variables explained 23% of the variation in perceived usability. The information provided and a lack of information were the most common positive and negative experiences. Furthermore, specific functionalities, such as prescription renewal and the ease of using the patient portal, were often mentioned as very positive experiences. The patients also mentioned negative emotions, such as anger and frustration, as part of their very negative experiences. CONCLUSIONS The study offers empirical evidence about the significant role of individual experiences when patients are evaluating the usability of patient portals. The results suggest that positive and negative experiences provide relevant information that can be used for improving the patient portal’s usability. Usability should be improved so that patients receive information efficiently, easily, and quickly. Respondents would also appreciate interactive features in the patient portal.