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Background: Patients' online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users' overall experiences with national PAEHR services. Methods: The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users' experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data. Results: 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one in ten (10.7%) noted that unauthorised individuals had seen their health information. Conclusions: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences. [ABSTRACT FROM AUTHOR]

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., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

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., (©Maria Hägglund, Anna Kharko, Annika Bärkås, Charlotte Blease, Åsa Cajander, Catherine DesRoches, Asbjørn Johansen Fagerlund, Josefin Hagström, Isto Huvila, Iiris Hörhammer, Bridget Kane, Gunnar O Klein, Eli Kristiansen, Jonas Moll, Irene Muli, Hanife Rexhepi, Sara Riggare, Peeter Ross, Isabella Scandurra, Saija Simola, Hedvig Soone, Bo Wang, Maedeh Ghorbanian Zolbin, Rose-Mharie Åhlfeldt, Sari Kujala, Monika Alise Johansen. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.06.2024.)

Background: Patient-accessible electronic health records (PAEHRs) hold promise for empowering patients, but their impact may vary between mental and somatic health care. Medical professionals and ethicists have expressed concerns about the potential challenges of PAEHRs for patients, especially those receiving mental health care., Objective: This study aims to investigate variations in the experiences of online access to electronic health records (EHRs) among persons receiving mental and somatic health care, as well as to understand how these experiences and perceptions vary among those receiving mental health care at different levels of point of care., Methods: Using Norwegian data from the NORDeHEALTH 2022 Patient Survey, we conducted a cross-sectional descriptive analysis of service use and perceptions of perceived mistakes, omissions, and offensive comments by mental and somatic health care respondents. Content analysis was used to analyze free-text responses to understand how respondents experienced the most serious errors in their EHR., Results: Among 9505 survey participants, we identified 2008 mental health care respondents and 7086 somatic health care respondents. A higher percentage of mental health care respondents (1385/2008, 68.97%) reported that using PAEHR increased their trust in health care professionals compared with somatic health care respondents (4251/7086, 59.99%). However, a significantly larger proportion (P<.001) of mental health care respondents (976/2008, 48.61%) reported perceiving errors in their EHR compared with somatic health care respondents (1893/7086, 26.71%). Mental health care respondents also reported significantly higher odds (P<.001) of identifying omissions (758/2008, 37.75%) and offensive comments (729/2008, 36.3%) in their EHR compared with the somatic health care group (1867/7086, 26.35% and 826/7086, 11.66%, respectively). Mental health care respondents in hospital inpatient settings were more likely to identify errors (398/588, 67.7%; P<.001) and omissions (251/588, 42.7%; P<.001) than those in outpatient care (errors: 422/837, 50.4% and omissions: 336/837, 40.1%; P<.001) and primary care (errors: 32/100, 32% and omissions: 29/100, 29%; P<.001). Hospital inpatients also reported feeling more offended (344/588, 58.5%; P<.001) by certain content in their EHR compared with respondents in primary (21/100, 21%) and outpatient care (287/837, 34.3%) settings. Our qualitative findings showed that both mental and somatic health care respondents identified the most serious errors in their EHR in terms of medical history, communication, diagnosis, and medication., Conclusions: Most mental and somatic health care respondents showed a positive attitude toward PAEHRs. However, mental health care respondents, especially those with severe and chronic concerns, expressed a more critical attitude toward certain content in their EHR compared with somatic health care respondents. A PAEHR can provide valuable information and foster trust, but it requires careful attention to the use of clinical terminology to ensure accurate, nonjudgmental documentation, especially for persons belonging to health care groups with unique sensitivities., (©Bo Wang, Eli Kristiansen, Asbjørn Johansen Fagerlund, Paolo Zanaboni, Maria Hägglund, Annika Bärkås, Sari Kujala, Åsa Cajander, Charlotte Blease, Anna Kharko, Isto Huvila, Bridget Kane, Monika Alise Johansen. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 25.12.2023.)

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., (©Maria Hägglund, Anna Kharko, Josefin Hagström, Annika Bärkås, Charlotte Blease, Åsa Cajander, Catherine DesRoches, Asbjørn Johansen Fagerlund, Barbara Haage, Isto Huvila, Iiris Hörhammer, Bridget Kane, Gunnar O Klein, Eli Kristiansen, Kerli Luks, Jonas Moll, Irene Muli, Eline Hovstad Raphaug, Hanife Rexhepi, Sara Riggare, Peeter Ross, Isabella Scandurra, Saija Simola, Hedvig Soone, Bo Wang, Maedeh Ghorbanian Zolbin, Rose-Mharie Åhlfeldt, Sari Kujala, Monika Alise Johansen. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 13.11.2023.)

Background: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC., Objective: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups., Methods: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square., Results: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were "very important," but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups., Conclusions: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records., (©Annika Bärkås, Anna Kharko, Charlotte Blease, Åsa Cajander, Asbjørn Johansen Fagerlund, Isto Huvila, Monika Alise Johansen, Bridget Kane, Sari Kujala, Jonas Moll, Hanife Rexhepi, Isabella Scandurra, Bo Wang, Maria Hägglund. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 03.11.2023.)

Objectives: The introduction of information and communication technology influences the work environment of large groups of employees in healthcare. In Sweden, a national healthcare service providing patient accessible electronic health records (PAEHR) has been deployed, and this paper investigates nurses' expected effects of this implementation., Setting: Nurses associated with the Swedish Association of Health Professionals working in healthcare such as primary care, hospitals and midwives in Sweden. Before a full-scale national implementation of PAEHR, a web survey study was distributed nationally. The respondents represented all 21 Swedish regions. Questions included five-point Likert scale questions and open questions., Participants: A survey link was distributed via email to 8460 registered nurses, midwives and union representatives in Sweden. The response rate was 35.4% (2867 respondents: registered nurses 84%; midwives 6%; chief position 5%; in projects 2% and other 3%). Three reminders were sent out, all of them increasing the response rate. A majority of the respondents were female (89.9%), 8.4% male, whereas 1.7% did not indicate their gender. 31.4% were under 40 years old, 53.8% 40-59 and 13.7% over 60., Results: Data were analysed using exploratory factor analysis with principal component analysis as the extraction method. The analysis revealed three distinct factors related to nurses' expectations of PAEHR: (1) PAEHR improves the quality of care, (2) PAEHR improves the quality of the work environment and (3) risk and fears concerning patients' well-being. Some interesting results include that more experienced nurses are more favourable to PAEHR. Our analysis also shows that the view of the nurse-patient relationship is an essential underlying factor related to positive or negative expectations., Conclusions: Results show that the expectations and perceptions of PAEHR vary depending on the nurse's view of who the electronic record belongs to. Younger nurses are somewhat more negative towards PAEHR than older nurses., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

To explicate how experiences with patient-accessible electronic health records correspond to the expectations of the users, we present qualitative results of older adults' experiences with the Finnish national patient-accessible health record My Kanta and similar services. 24 persons, 17 women and 7 men aged 55-73, took part in the study. We interviewed six focus groups of 3-5 participants with previous experience of My Kanta, in two cities in Finland. We used a convenience sample and video- and audio-recording as well as note taking. The interviews were transcribed verbatim. The inductive analysis was based on content analysis. We identified major uses, enablers, barriers, and outcomes of My Kanta. In addition to earlier reported barriers and enablers, the findings show that launch-time lack of useful content and features in systems still under development can cause frustration and hinder their effective use at the time and in the long run. Concerns and barriers relating to use were socio-techno-informational and tightly associated with the contents of the system. Improved security, usability and additional information and functions might increase use. Furthermore, coherent and timely information from health-care providers should be available in the e-health services.

Patients' online access to their EHR together with the rapid proliferation of medical information on the Internet has changed how patients use information to learn about their health. Patients' tendency to turn to the Internet to find information about their health and care is well-documented. However, little is known about patients' information seeking behavior when using online EHRs. By using information horizons as an analytical tool this paper aims to investigate the information behavior of cancer patients who have chosen to view their EHRs (readers) and to those who have not made that option (non-readers). Thirty interviews were conducted with patients. Based on information horizons, it seems that non-reading is associated with living in a narrower information world in comparison to readers. The findings do not suggest that the smallness would be a result of active avoidance of information, or that it would be counterproductive for the patients. The findings suggest, however, that EHRs would benefit from comprehensive linking to authoritative health information sources to help users to understand their contents. In parallel, healthcare professionals should be more aware of their personal role as a key source of health information to those who choose not to read their EHRs.

Despite the fact that patient accessible electronic health records (PAEHRs) have been around for many years in several countries, there is a lack of research investigating patient's preferences for receiving bad news, including through PAEHRs. Little is also known about the characteristics of the patients who prefer to receive bad news through the PAEHR in terms of, for example medical diagnosis, age and educational level. This study, based on a national patient survey in Sweden ( N  = 2587), investigated this. Results show that, generally, receiving bad news by reading in the PAEHR is still among the least preferred options. Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women ( p  = 0.001), and the same goes for those who are not working/have worked in healthcare ( p  = 0.007). An effect of disease groups was also found, showing that diabetes patients in particular, want to receive bad news through the PAEHR.

This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare.

This study explores patients' perspectives on sharing their personal health data, which is traditionally shared through discussions with peers and relatives. However, other possibilities for sharing have emerged through the introduction of online services such as Patient Accessible Electronic Health Records (PAEHR). In this article, we investigate strategies that patients adopt in sharing their PAEHR. Data were collected through a survey with 2587 patients and through 15 semi-structured interviews with cancer patients. Results show that surprisingly few patients share their information, and that older patients and patients with lower educational levels share more frequently. A large majority of patients trust the security of the system when sharing despite the high sensitivity of health information. Finally, we discuss the design implications addressing identified problems when sharing PAEHR, as well as security and privacy issues connected to sharing.

Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally., Objective: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system., Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents., Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen., Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients., (©Jonas Moll, Hanife Rexhepi, Åsa Cajander, Christiane Grünloh, Isto Huvila, Maria Hägglund, Gunilla Myreteg, Isabella Scandurra, Rose-Mharie Åhlfeldt. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 01.11.2018.)

Patients' access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this article is to provide in-depth understanding of cancer patients' attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching e-Health services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians, the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital.