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| 2. |
- Bärkås, Annika, et al.
(författare)
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Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients : Results from a Nationwide Survey in Sweden
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
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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. |
- Hägglund, Maria, et al.
(författare)
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NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record Access
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
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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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| 4. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
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The NORDeHEALTH 2022 Patient Survey : Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
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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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| 5. |
- Kujala, Sari, et al.
(författare)
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Benchmarking usability of patient portals in Estonia, Finland, Norway, and Sweden
- 2024
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Ingår i: International Journal of Medical Informatics. - : Elsevier. - 1386-5056 .- 1872-8243. ; 181
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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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| 6. |
- Simola, Saija, et al.
(författare)
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Patients’ Experiences of a National Patient Portal and Its Usability : Cross-Sectional Survey Study
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
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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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| 7. |
- Baric, Vedrana B., et al.
(författare)
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Partnering for change (P4C) in Sweden : a study protocol of a collaborative school-based service delivery model to create inclusive learning environments
- 2023
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Ingår i: BMC Public Health. - : Springer Nature. - 1471-2458. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Inclusive learning environments are considered as crucial for children's engagement with learning and participation in school. Partnering for change (P4C) is a collaborative school-based service delivery model where services are provided at three levels of intensity based on children's needs (class, group-, individual interventions). Interventions in P4C are provided universally to support all children with learning, not only children with special education needs (SEN), and as such are expected to be health-promoting.Aim: The aim of the study is to evaluate the effectiveness and cost-effectiveness of P4C as well as school staff members' and children's experiences after P4C.Methods: In a parallel, non-randomised controlled intervention design, 400 children, aged 6-12 years, and their teachers, will be recruited to either intervention classes, working according to the P4C, or to control classes (allocation ratio 1:1). Data will be collected at baseline, post-intervention (4 months), and 11 months follow-up post baseline. The primary outcome is children's engagement with learning in school. Secondary outcomes include for example children's health-related quality of life and wellbeing, occupational performance in school, attendance, and special educational needs. The difference-in-differences method using regression modelling will be applied to evaluate any potential changes following P4C. Focus group interviews focusing on children, and professionals' experiences will be performed after P4C. A health economic evaluation of P4C will be performed, both in the short term (post intervention) and the long term (11-month follow-up). This study will provide knowledge about the effectiveness of P4C on children's engagement with learning, mental health, and wellbeing, when creating inclusive learning environments using a combination of class-, group- and individual-level interventions.
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| 8. |
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| 9. |
- Kharko, Anna, et al.
(författare)
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Mapping Patients' Online Record Access Worldwide : Preliminary Results from an International Survey of Healthcare Experts.
- 2024
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Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 114-118
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Tidskriftsartikel (refereegranskat)abstract
- While research on the effects of patient access to health records is increasing, a basic understanding of the spread of patient-accessible electronic health records worldwide is lacking. In this survey of healthcare experts with professional and personal experience from 29 countries, we explored the state of patient online record access (ORA). We asked participants whether ORA exists in their country and which information is available through it. Experts in all polled countries reported having some national access to health records, with 6 (21%) countries providing exclusively paper-based records and 23 (79%) countries having ORA. Overview of test/lab results and prescription/medication lists were the most commonly available information. Free-text clinical notes were accessible in less than half of the surveyed countries (12, 41%). We will continue to map the state of patient ORA, focusing on traditionally underrepresented countries.
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| 10. |
- Morales-Suarez-Varela, Maria M., et al.
(författare)
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Occupational Exposure to Chlorinated and Petroleum Solvents and Mycosis Fungoides
- 2013
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Ingår i: Journal of Occupational and Environmental Medicine. - : Lippincott Williams & Wilkins. - 1076-2752 .- 1536-5948. ; 55:8, s. 924-931
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To evaluate the potential association between occupational exposure to chlorinated and petroleum solvents and mycosis fungoides (MF). Methods: A questionnaire on lifetime job history was administered to 100 patients diagnosed with MF and 2846 controls. Odds ratios (ORs) were calculated as the measure of the association between exposure to each specific solvent and MF. Results: In the total sample and in men, cases and controls did not differ in relation to exposure to any of the solvents studied. In women, an association with MF was seen for the highest level of estimated exposure to perchloroethylene (OR = 11.38; 95% confidence interval: 1.04 to 124.85) and for exposure less than the median to kerosene/fuel/gasoil (OR = 8.53; 95% confidence interval: 1.11 to 65.62). Conclusions: These results do not provide conclusive evidence that exposure to solvents may increase risk of MF because they were not found in men.
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