| 1. |
- Bärkås, Annika, et al.
(författare)
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Patients' Experiences of Demanded Access to Online Health Records
- 2024
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Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1424-1425
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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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| 2. |
- Bärkås, Annika, et al.
(författare)
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Patients' Experiences of Unwanted Access to Their Online Health Records
- 2023
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Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 302, s. 356-357, s. 356-357
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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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| 3. |
- Fagerlund, A. J., et al.
(författare)
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Experiences from patients in mental healthcare accessing their electronic health records : Results from a cross-national survey in Estonia, Finland, Norway, and Sweden
- 2024
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Ingår i: BMC Psychiatry. - : BioMed Central (BMC). - 1471-244X. ; 24:1
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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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| 4. |
- Hagström, Josefin, et al.
(författare)
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Security and Privacy of Online Record Access : A Survey of Adolescents' Views and Experiences in Sweden
- 2024
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Ingår i: Journal of Adolescent Health. - : Elsevier. - 1054-139X .- 1879-1972.
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information. Methods: This study included a subset of items from a national online patient survey conducted in Sweden (January-February 2022), focusing on respondents aged 15–19 years. Gender and health status differences were calculated using the Kruskal-Wallis test. Results: Of 218 adolescent respondents (77.1% female), a minority had security and privacy concerns. A notable proportion (41.3%) wished to control who could see their records, and those who reported better perceived health were more likely to want to manage access to their electronic health record (H = 13.569, p = .009). Most had not experienced unauthorized access to their records (75.2%) and had never shared health information on other online applications (85.8%). More than half (56.0%) perceived some information as sensitive, where mental health was the most common (76.0%). Most felt that reading their notes improved their trust for their healthcare professional (65.6%) and supported better communication with healthcare professionals (66.5%). Discussion: In this national survey, adolescents generally reported few concerns about patient portals. Findings emphasize the need for security and privacy protection and to empower adolescents with greater control over access to their health information housed in electronic health record systems.
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| 5. |
- Huvila, Isto, Professor, 1976-, et al.
(författare)
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Differences in Health Information Literacy Competencies Among Older Adults, Elderly and Younger Citizens
- 2019
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Ingår i: Information Literacy in Everyday Life. - Cham : Springer. - 9783030134716 - 9783030134723 ; , s. 136-143
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Bokkapitel (refereegranskat)abstract
- To address the research gap on age-based differences in health information literacy (HIL), we investigated how younger (born 1960–) and older adults (1946–1960), and elderly citizens (–1945) differed from each other by their HIL competencies. Data were collected with an online survey of patients using the Swedish national electronic health record system. Altogether, 2,587 users responded. One-way ANOVA with post hoc tests revealed several differences between the groups: younger adults were less likely to value health information than older adults; older adults and elderly were least likely to compare information from multiple sources and had trouble in determining health information needs; older adults were most likely to have trouble understanding health terminology and the elderly to have difficulties in understanding medicinal package labels. The study shows that HIL is not necessarily improving or declining but adapting to challenges of advanced age. © 2019, Springer Nature Switzerland AG.
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| 6. |
- Huvila, Isto, et al.
(författare)
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Patients' perceptions of their medical records from different subject positions
- 2015
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Ingår i: Journal of the Association for Information Science and Technology. - : John Wiley & Sons. - 2330-1635 .- 2330-1643. ; 66:12, s. 2456-2470
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Tidskriftsartikel (refereegranskat)abstract
- Better knowledge of the habits and preferences of patients helps one understand why and how patients might need or want to access health services online and offline. Such knowledge provides a basis for designing systems for providing complementary health information. This article discusses how patients' conceptualizations of their health-information-related preferences, motivations, and needs are linked to the perceived role of medical records as an informational artifact. We identified seven subject positions: (P1) Hypothetically positive to e-health services generally, (P2) Positive to reading medical records due to implications, (P3) Positive to all Internet use including medical records online, (P4) Distrustful and wants to be in control of health treatment, (P5) Worried about health, (P6) Wants communication with health care professionals, and (P7) Do not understand their medical record. These subject positions can explain the worry and enthusiasm documented in earlier literature. The diversity of subject positions implies that health care information services should be planned with different subject positions in mind rather than a simple demographic group. Special attention needs to be given to finding flexible solutions that address the opportunities and worries of the identified subject positions.
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| 7. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
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A Nordic Perspective on Patient Online Record Access and the European Health Data Space
- 2024
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26:1
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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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| 8. |
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| 9. |
- 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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| 10. |
- Hägglund, Maria, et al.
(författare)
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Timing It Right : Patients' Online Access to Their Record Notes in Sweden
- 2018
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Ingår i: Building Continents of Knowledge in Oceans of Data. - : IOS Press. - 9781614998518 - 9781614998525 ; 247, s. 336-340
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Konferensbidrag (refereegranskat)abstract
- In Sweden, and internationally, there is an ongoing debate about the effects of national implementations of Patient Accessible Electronic Health Records (PAEHRs). The purpose of this paper was to describe the current situation in Sweden and compare this with the expectations on reasonable waiting time for information access of users of the Swedish PAEHR. Data were collected from publicly available resources regarding current implementation in the 21 county councils, contrasted with patient experiences, gathered from a national online survey. The results indicate that patients have high expectations on immediate access to information, while this varies greatly in implementation across Sweden.
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