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1.
  • Bärkås, Annika, et al. (författare)
  • Analysis of Voluntary User Feedback of the Swedish National PAEHR Service
  • 2019
  • Ingår i: MEDINFO 2019. - : IOS Press. - 9781643680033 - 9781643680026 ; 264, s. 1126-1130
  • Konferensbidrag (refereegranskat)abstract
    • "Journalen" is a patient accessible electronic health record (PAEHR) and the national eHealth service for Sweden's citizens to gain access to their EHR. The Swedish national eHealth organization Inera, responsible for Journalen, created an inbox to receive voluntary user feedback about Journalen in order to improve the service from the user perspective. Based on voluntary user feedback via email. This study explored patients' experiences of using the national eHealth service and identified pros and cons. A mixed method content analysis was performed. In total, 1084 emails from 2016-2017 have been analyzed. 9 categories were identified, the most frequent ones related to questions about why some information was not accessible (due to regional differencies), feedback (including only positive or negative comments as well as constructive improvement suggestions), and emails about errors that user found in their record. These data can be successfully used to continuously improve an already implemented eHealth service.
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2.
  • Bärkås, Annika, et al. (författare)
  • Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients : Results from a Nationwide Survey in Sweden
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • 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. 
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3.
  • Bärkås, Annika (författare)
  • Patients’ Access to Their Mental Health Records : Understanding Policy, Access, and Patient Experiences
  • 2024
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • ORA is the concept of patients' access to clinical information, which has become more widespread worldwide. When patients are provided online record access (ORA) to their health records, concerns have been raised by healthcare professionals, especially when it comes to patients with mental health diagnoses. In the general population, positive aspects appear to outweigh the negative, yet limited research has so far explored the impact of ORA in mental healthcare. The overall aim of this thesis was to explore how patients experience ORA in mental healthcare through four studies: 1) a literature review aimed to explore the current literature on the experiences of ORA among mental healthcare patients, care partners, and healthcare professionals, 2) a document analysis combined with key stakeholder email interviews that aimed to explore to what extent ORA in mental healthcare has been implemented in Sweden including national and local policy regulations, 3) an online patient survey study aimed to understand mental healthcare patients' experiences with ORA in Sweden, Estonia, Finland, and Norway, and 4) an online patient survey study aimed to understand if and how patients with mental health conditions experiences of ORA differs from patients in other healthcare settings. More patients reported positive experiences with ORA in mental healthcare than negative experiences. Common benefits of ORA included, among others, a greater sense of control over their care, improved understanding of their mental health diagnosis, and better adherence to appointments. Despite patients' predominant positive experiences, only 17 out of 21 regions in Sweden offered ORA in mental healthcare in 2021. Additionally, many patients experienced errors and omissions and felt offended by the content of their health records. Mental healthcare patients experienced this at a higher rate than patients in other healthcare settings.In conclusion, mental healthcare patients have higher rates of negative experiences of ORA compared to patients in other healthcare settings. However, patients' experiences of ORA are still predominantly positive among both patient groups. Yet, in 2021, only 17 regions offered patients ORA in mental healthcare. Denying mental healthcare patients ORA to protect them from negative experiences could instead increase stigma in this patient group.
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4.
  • Bärkås, Annika, et al. (författare)
  • Patients’ access to their psychiatric notes : Current policies and practices in Sweden
  • 2021
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:17
  • Tidskriftsartikel (refereegranskat)abstract
    • Patients’ access to electronic health records (EHRs) is debated worldwide, and access to psychiatry records is even more criticized. There is a nationwide service in Sweden which offers all citizens the opportunity to read their EHR, including clinical notes. This study aims to explore Swedish national and local policy regulations regarding patients’ access to their psychiatric notes and describe to what extent patients currently are offered access to them. The rationale behind the study is that current policies and current practices may differ between the 21 self-governing regions, although there is a national regulation. We gathered web-based information from policy documents and regulations from each region’s website. We also conducted key stakeholder interviews with respondents from the regions and cross-regional private care providers, using a qualitative approach. The results show that 17 of 21 regions share psychiatric notes with patients, where forensic psychiatric care was the most excluded psychiatric care setting. All private care providers reported that they mainly follow the regions’ guidelines. Our findings show that regional differences concerning sharing psychiatric notes persist, despite Swedish regulations and a national policy that stipulates equal care for everyone. The differences, however, appear to have decreased over time, and we report evidence that the regions are moving toward increased transparency for psychiatry patients. 
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5.
  • Bärkås, Annika, et al. (författare)
  • Patients' Access to Their Psychiatric Records : A Comparison of Four Countries
  • 2022
  • Ingår i: Challenges of Trustable AI and Added-Value on Health. - Amsterdam; Berlin; Washington, DC : IOS Press. - 9781643682846 - 9781643682853 ; 294, s. 510-514
  • Konferensbidrag (refereegranskat)abstract
    • Several Nordic and Baltic countries are forerunners in the digitalization of patient ehealth services and have since long implemented psychiatric records as parts of the ehealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.
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6.
  • Bärkås, Annika, et al. (författare)
  • Patients' Experiences of Demanded Access to Online Health Records
  • 2024
  • Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1424-1425
  • Tidskriftsartikel (refereegranskat)abstract
    • Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR.
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7.
  • Bärkås, Annika, et al. (författare)
  • Patients' Experiences of Unwanted Access to Their Online Health Records
  • 2023
  • Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 302, s. 356-357, s. 356-357
  • Tidskriftsartikel (refereegranskat)abstract
    • Patient-Accessible Electronic Health Records (PAEHR) are particularly disputed in mental healthcare. We aim to explore if there is any association between patients having a mental health condition and someone unwanted seeing their PAEHR. A chi-square test showed a statistically significant association between group belonging and experiences of someone unwanted seeing their PAEHR.
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8.
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9.
  • Fagerlund, A. J., et al. (författare)
  • Experiences from patients in mental healthcare accessing their electronic health records : Results from a cross-national survey in Estonia, Finland, Norway, and Sweden
  • 2024
  • Ingår i: BMC Psychiatry. - : BioMed Central (BMC). - 1471-244X. ; 24:1
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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11.
  • Hägglund, Maria, Lektor, 1975-, et al. (författare)
  • A Nordic Perspective on Patient Online Record Access and the European Health Data Space
  • 2024
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26:1
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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12.
  • Hägglund, Maria, et al. (författare)
  • NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record Access
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
    • 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.
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13.
  • Hägglund, Maria, Lektor, 1975-, et al. (författare)
  • The NORDeHEALTH 2022 Patient Survey : Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • 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. 
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14.
  • Kharko, Anna, et al. (författare)
  • Open notes in psychotherapy : An exploratory mixed methods survey of psychotherapy students in Switzerland
  • 2024
  • Ingår i: Digital Health. - : Sage Publications. - 2055-2076. ; 10
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundIn a growing number of countries, patients are offered access to their full online clinical records, including the narrative reports written by clinicians (the latter, referred to as “open notes”). Even in countries with mature patient online record access, access to psychotherapy notes is not mandatory. To date, no research has explored the views of psychotherapy trainees about open notes.ObjectiveThis study aimed to explore the opinions of psychotherapy trainees in Switzerland about patients’ access to psychotherapists’ free-text summaries.MethodsWe administered a web-based mixed methods survey to 201 psychotherapy trainees to explore their familiarity with and opinions about the impact on patients and psychotherapy practice of offering patients online access to their psychotherapy notes. Descriptive statistics were used to analyze the 42-item survey, and qualitative descriptive analysis was employed to examine written responses to four open-ended questions.ResultsSeventy-two (35.8%) trainees completed the survey. Quantitative results revealed mixed views about open notes. 75% agreed that, in general open notes were a good idea, and 94.1% agreed that education about open notes should be part of psychotherapy training. When considering impact on patients and psychotherapy, four themes emerged: (a) negative impact on therapy; (b) positive impact on therapy; (c) impact on patients; and (d) documentation. Students identified concerns related to increase in workload, harm to the psychotherapeutic relationship, and compromised quality of records. They also identified many potential benefits including better patient communication and informed consent processes. In describing impact on different therapy types, students believed that open notes might have differential impact depending on the psychotherapy approaches.ConclusionsSharing psychotherapy notes is not routine but is likely to expand. This mixed methods study provides timely insights into the views of psychotherapy trainees regarding the impact of open notes on patient care and psychotherapy practice.
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15.
  • Kujala, Sari, et al. (författare)
  • Benchmarking usability of patient portals in Estonia, Finland, Norway, and Sweden
  • 2024
  • Ingår i: International Journal of Medical Informatics. - : Elsevier. - 1386-5056 .- 1872-8243. ; 181
  • Tidskriftsartikel (refereegranskat)abstract
    • INTRODUCTION: Poor usability is a barrier to widespread adoption of electronic health records (EHR). Providing good usability is especially challenging in the health care context, as there is a wide variety of patient users. Usability benchmarking is an approach for improving usability by evaluating and comparing the strength and weaknesses of systems. The main purpose of this study is to benchmark usability of patient portals across countries. METHODS: A mixed-methods survey approach was applied to benchmark the national patient portals offering patient access to EHR in Estonia, Finland, Norway, and Sweden. These Nordic countries have similar public healthcare systems, and they are pioneers in offering patients access to EHR for several years. In a survey of 29,334 patients, both patients' quantitative ratings of usability and their qualitative descriptions of very positive and very negative peak experiences of portal use were collected. RESULTS: The usability scores ranged from good to fair level of usability. The narratives of very positive and very negative experiences included the benefits of the patient portals and experienced usability issues. The regression analysis of results showed that very positive and negative experiences of patient portal use explain 19-35% of the variation of usability scores in the four countries. The percentage of patients who reported very positive or very negative experiences in each country was unrelated to the usability scores across countries. CONCLUSIONS: The survey approach could be used to evaluate usability with a wide variety of users and it supported learning from comparison across the countries. The combination of quantitative and qualitative data provided an approximation of the level of the perceived usability, and identified usability issues to be improved and useful features that patients appreciate. Further work is needed to improve the comparability of the varied samples across countries. 
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16.
  • Moll, Jonas, 1982-, et al. (författare)
  • Contextual Factors of Patients' Access to Electronic Health Records in Four European Countries : A Socio-Technical Cross-Country Analysis
  • 2024
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: The NORDeHEALTH project studies patient access to electronic health records in Estonia, Finland, Norway and Sweden. Such country comparisons require an analysis of the socio-technical context of these services.Objective: To develop a method for a socio-technical analysis of patient accessible electronic health records (PAEHRs) that advances a framework first presented by Sitting and Singh. This first article in a series presents the evaluation 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 socio-technical analysis were discussed and extended in a series of discussions with international stakeholders. A spreadsheet with relevant questions related to the studied services was constructed and distributed to the four participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in ten socio-technical dimensions.Results: Three dimensions were added to the method of Sittig and Singh to separate clinical content from features and functions of PAEHRs and to demonstrate basic characteristics of the different countries regarding national and regional steering of healthcare and ICT developments. The final framework contained the following dimensions: Metadata, Hardware and Software Computing Infrastructure, Features and Functions, Clinical Content Shared with Patients, Human Computer Interface, People, Workflow and Communication, Healthcare Organization’s Internal Policies, Procedures and Culture, National Rules, Regulations and Incentives, System Measurement and Monitoring and Healthcare System Context. Several similarities were identified between the compared countries, especially regarding Hardware and Software Computing Infrastructure. When it comes to the dimension Healthcare System Context most of the differences could be identified. One important difference concerned the governing of ICT development where different levels (state, region, municipality) were responsible in different countries.Conclusions: This is the first large-scale international socio-technical analysis of services for patients to access their electronic health records; the present study compared services in Estonia, Finland, Norway and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts.
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17.
  • Schwarz, Julian, et al. (författare)
  • Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions : Scoping Review
  • 2021
  • Ingår i: JMIR Mental Health. - : JMIR Publications. - 2368-7959. ; 8:12
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration.Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps.Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings.Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members' mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes.Conclusions: PAEHRs in MHC may strengthen user involvement, patients' autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.
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18.
  • Simola, Saija, et al. (författare)
  • Patients’ Experiences of a National Patient Portal and Its Usability : Cross-Sectional Survey Study
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • 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. 
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19.
  • Wang, Bo, et al. (författare)
  • Users’ Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care : Cross-Sectional Study
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • 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. 
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