22 results on '"Rexhepi H"'
Search Results
2. Experiences from patients in mental healthcare accessing their electronic health records : Results from a cross-national survey in Estonia, Finland, Norway, and Sweden
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Fagerlund, A. J., Bärkås, A., Kharko, A., Blease, C. R., Hagström, J., Huvila, I., Hörhammer, I., Kane, Bridget, Kristiansen, E., Kujala, S., Moll, J., Rexhepi, H., Scandurra, I., Simola, S., Soone, H., Wang, B., Åhlfeldt, R.M., Hägglund, M., Johansen, M. A., Fagerlund, A. J., Bärkås, A., Kharko, A., Blease, C. R., Hagström, J., Huvila, I., Hörhammer, I., Kane, Bridget, Kristiansen, E., Kujala, S., Moll, J., Rexhepi, H., Scandurra, I., Simola, S., Soone, H., Wang, B., Åhlfeldt, R.M., Hägglund, M., and Johansen, M. A.
- 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 o
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- 2024
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3. Technological and informational frames:explaining age-related variation in the use of patient accessible electronic health records as technology and information
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Huvila, I. (Isto), Cajander, Å. (Åsa), Moll, J. (Jonas), Enwald, H. (Heidi), Eriksson-Backa, K. (Kristina), and Rexhepi, H. (Hanife)
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Information seeking behaviour ,Technology ,Theoretical concepts ,e-health ,End users - Abstract
Purpose: Data from a national patient survey (N = 1,155) of the Swedish PAEHR ”Journalen” users were analysed, and an extended version of the theory of technological frames was developed to explain the variation in the technological and informational framing of information technologies found in the data. Design/methodology/approach: Patient Accessible Electronic Health Records (PAEHRs) are implemented globally to address challenges with an ageing population. However, firstly, little is known about age-related variation in PAEHR use, and secondly, user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other. The purpose of this study is to investigate these two under-studied aspects of PAEHRs and propose a framework based on the theory of technological frames to support studying the second aspect, i.e. the interplay of information and technology–related perceptions. Findings: The results suggest that younger respondents were more likely to be interested in PAEHR contents for general interest. However, they did not value online access to the information as high as older ones. Older respondents were instead inclined to use medical records information to understand their health condition, prepare for visits, become involved in their own healthcare and think that technology has a much potential. Moreover, the oldest respondents were more likely to consider the information in PAEHRs useful and aimed for them but to experience the technology as inherently difficult to use. Research limitations/implications: The sample excludes non-users and is not a representative sample of the population of Sweden. However, although the data contain an unknown bias, there are no specific reasons to believe that it would differently affect the survey’s age groups. Practical implications: Age should be taken into account as a key factor that influences perceptions of the usefulness of PAEHRs. It is also crucial to consider separately patients’ views of PAEHRs as a technology and of the information contained in the EHR when developing and evaluating existing and future systems and information provision for patients. Social implications: This study contributes to bridging the gap between information behaviour and systems design research by showing how the theory of technological frames complemented with parallel informational frames to provide a potentially powerful framework for elucidating distinct conceptualisations of (information) technologies and the information they mediate. The empirical findings show how information and information technology needs relating to PAEHRs vary according to age. In contrast to the assumptions in much of the earlier work, they need to be addressed separately. Originality/value: Few earlier studies focus on (1) age-related variation in PAEHR use and (2) user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other.
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- 2021
4. Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden.
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Hagström J, Åhlfeldt RM, Blease C, Cajander Å, Rexhepi H, Moll J, Kane B, Scandurra I, and Hägglund M
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- Humans, Adolescent, Female, Sweden, Male, Surveys and Questionnaires, Young Adult, Privacy, Internet, Confidentiality, Electronic Health Records, Computer Security
- 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., (Copyright © 2024 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)
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- 2024
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5. Affordance trajectories and the usefulness of online records access among older adults in Sweden.
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Huvila I, Rexhepi H, Moll J, Ghorbanian Zolbin M, Blease C, Bärkås A, Åhlfeldt RM, Hagström J, Kane B, Scandurra I, Hägglund M, Klein GO, Wang B, and Kharko A
- Abstract
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.)
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- 2024
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6. A Nordic Perspective on Patient Online Record Access and the European Health Data Space.
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Hägglund M, Kharko A, Bärkås A, Blease C, Cajander Å, DesRoches C, Fagerlund AJ, Hagström J, Huvila I, Hörhammer I, Kane B, Klein GO, Kristiansen E, Moll J, Muli I, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Åhlfeldt RM, Kujala S, and Johansen MA
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- Humans, Scandinavian and Nordic Countries, Europe, European Union, Electronic Health Records
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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.)
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- 2024
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7. Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden.
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Hagström J, Blease C, Scandurra I, Moll J, Cajander Å, Rexhepi H, and Hägglund M
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- Female, Humans, Adolescent, Sweden, Health Personnel, Surveys and Questionnaires, Electronic Health Records, Telemedicine
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Background: Having online access to electronic health records (EHRs) may help patients become engaged in their care at an early age. However, little is known about adolescents using patient portals. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. The present study explored reasons for reading the EHRs, the perceived usefulness of information and functions in a patient portal and the association between frequency of use and encouragement to read the EHR., Methods: Data were collected in a survey using convenience sampling, available through the Swedish online health portal during 3 weeks in January and February 2022. This study included a subset of items and only respondents aged 15-19. Demographic factors and frequencies on Likert-style questions were reported with descriptive statistics, while Fisher's exact test was used to explore differences in use frequency based on having been encouraged to read by a healthcare professional (HCP)., Results: Of 13 008 users who completed the survey, 218 (1.7%) were unique users aged 15-19 (females: 77.1%). One-fifth (47/218, 21.6%) had been encouraged by HCPs to read their records, and having been encouraged by HCPs was related to higher use frequency (p=0.018). All types of information were rated high on usefulness, while some functions were rated low, such as blocking specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity., Conclusions: Adolescents who read their records online perceive it to be useful. Encouragement by HCPs can lead to increased use of patient portals among adolescents. Findings should be considered in the future design of patient portals for adolescents., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)
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- 2024
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8. Experiences of Patients With Mental Health Issues Having Web-Based Access to Their Records: National Patient Survey.
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Moll J, Myreteg G, and Rexhepi H
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- Humans, Mental Health, Patients, Internet, Electronic Health Records, Health Records, Personal
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Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups., Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how., Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences., Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health issues (mean_mental health 3.38, SD_mental health 1.21; mean_others 3.52, SD_others 1.18; P=.02) believe that PAEHRs help them in shared decision-making compared to other patient groups., Conclusions: Patients with mental health issues who took part in the survey, as a group, express some minor differences in both the use of the PAEHR and their experiences regarding its usefulness, as compared to other patients, as a group. This patient group shows a slightly higher interest in 2 types of use: checking for accuracy of care in the record and blocking access to mental health notes for professionals from other parts of the health care system. Compared to other patient groups, these patients are less likely to experience that the PAEHR is a support in shared decision-making. The study indicates that the benefits of PAEHR on a general level are the same for this patient group as for other patients. The study does not support clinicians' worry about possible harm to this patient group. Further research is however needed., (©Jonas Moll, Gunilla Myreteg, Hanife Rexhepi. Originally published in JMIR Mental Health (https://mental.jmir.org), 02.02.2024.)
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- 2024
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9. Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online.
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Hagström J, Blease C, Moll J, Rexhepi H, Scandurra I, and Hägglund M
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- Humans, Adolescent, Young Adult, Adult, Health Personnel, Reading, Emotions
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Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.
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- 2024
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10. The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia.
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Hägglund M, Kharko A, Hagström J, Bärkås A, Blease C, Cajander Å, DesRoches C, Fagerlund AJ, Haage B, Huvila I, Hörhammer I, Kane B, Klein GO, Kristiansen E, Luks K, Moll J, Muli I, Raphaug EH, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Åhlfeldt RM, Kujala S, and Johansen MA
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- Humans, Female, Estonia epidemiology, Finland, Sweden, Cross-Sectional Studies, Norway, Electronic Health Records, Patient Portals
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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.)
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- 2023
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11. Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden.
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Bärkås A, Kharko A, Blease C, Cajander Å, Johansen Fagerlund A, Huvila I, Johansen MA, Kane B, Kujala S, Moll J, Rexhepi H, Scandurra I, Wang B, and Hägglund M
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- Female, Humans, Electronic Health Records, Surveys and Questionnaires, Sweden, Male, Health Records, Personal, Mental Health
- 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., (©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.)
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- 2023
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12. Patients' Access to Their Psychiatric Records - A Comparison of Four Countries.
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Bärkås A, Hägglund M, Moll J, Cajander Å, Rexhepi H, Hörhammer I, Blease C, and Scandurra I
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- Electronic Health Records, Humans, Patient Participation, Sweden, Psychiatry, Telemedicine
- 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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- 2022
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13. Patients' Access to Their Psychiatric Notes: Current Policies and Practices in Sweden.
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Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, and Hägglund M
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- Humans, Policy, Psychotherapy, Sweden, Electronic Health Records, Psychiatry
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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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- 2021
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14. Cancer patients' information seeking behavior related to online electronic healthcare records.
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Rexhepi H, Huvila I, Åhlfeldt RM, and Cajander Å
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- Delivery of Health Care, Electronic Health Records, Electronics, Health Facilities, Humans, Internet, Information Seeking Behavior, Neoplasms therapy
- Abstract
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.
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- 2021
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15. Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health.
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Rexhepi H, Moll J, Huvila I, and Åhlfeldt RM
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- Female, Humans, Male, Physician-Patient Relations, Sweden, Electronic Health Records, Health Records, Personal
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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.
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- 2021
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16. Patients, clinicians and open notes: information blocking as a case of epistemic injustice.
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Blease C, Salmi L, Rexhepi H, Hägglund M, and DesRoches CM
- Abstract
In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians ('open notes'). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients' access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)
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- 2021
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17. Online electronic healthcare records: Comparing the views of cancer patients and others.
- Author
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Rexhepi H, Moll J, and Huvila I
- Subjects
- Electronics, Humans, Physician-Patient Relations, Surveys and Questionnaires, Electronic Health Records, Neoplasms therapy
- Abstract
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.
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- 2020
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18. The Effect of Patient Accessible Electronic Health Records on Communication and Involvement in Care - A National Patient Survey in Sweden.
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Moll J and Rexhepi H
- Subjects
- Communication, Humans, Surveys and Questionnaires, Sweden, Electronic Health Records, Health Records, Personal
- Abstract
During recent years, patient accessible electronic health records (PAEHRs) have been implemented nationally in Sweden, as well as internationally, as a means of supporting patient engagement and shared decision making. Few studies have, however, investigated the long-term effects of PAEHRs on communicaiton with care professionals and involvement in care. The national survey study presented here, answered by 2587 patients in Sweden, focuses on these aspects specifically. The results show that the Swedish PAEHR system Journalen has had a positive impact on communication with care overall (84% agree or strongly agree with that communication with medical staff has improved), but only 31% agree or strongly agree with that the content of the PAEHR is discussed with care professionals. Journalen also seems to have a positive impact on involvement in care, but the results are mixed when it comes to effects on shared decision making.
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- 2020
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19. Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden.
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Moll J, Rexhepi H, Cajander Å, Grünloh C, Huvila I, Hägglund M, Myreteg G, Scandurra I, and Åhlfeldt RM
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- Female, Humans, Male, Surveys and Questionnaires, Sweden, Electronic Health Records standards, Patient Portals standards
- Abstract
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.)
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- 2018
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20. Cancer patients' attitudes and experiences of online access to their electronic medical records: A qualitative study.
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Rexhepi H, Åhlfeldt RM, Cajander Å, and Huvila I
- Subjects
- Health Services Accessibility standards, Humans, Internet, Interviews as Topic methods, Neoplasms complications, Patient Access to Records psychology, Patient Participation methods, Physician-Patient Relations, Qualitative Research, Access to Information psychology, Electronic Health Records standards, Neoplasms psychology, Patient Access to Records standards
- Abstract
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.
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- 2018
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21. "Why Do They Need to Check Me?" Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study.
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Grünloh C, Myreteg G, Cajander Å, and Rexhepi H
- Subjects
- Decision Making, Female, Humans, Male, Physicians, Power, Psychological, Qualitative Research, Self Care, Telemedicine, Electronic Health Records, Patient Participation, Physician-Patient Relations
- Abstract
Background: Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients., Objective: This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians' constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement., Methods: A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed., Results: Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient's role, lack of skills (technical or regarding medical jargon), motives to read, and patients' characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care., Conclusions: Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of "power" in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of "monitoring the doctor" but to make sense of the situation., (©Christiane Grünloh, Gunilla Myreteg, Åsa Cajander, Hanife Rexhepi. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 15.01.2018.)
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- 2018
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22. Supporting Active Patient and Health Care Collaboration: A Prototype for Future Health Care Information Systems.
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Åhlfeldt RM, Persson A, Rexhepi H, and Wåhlander K
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- Humans, Cooperative Behavior, Forecasting, Health Information Systems trends, Models, Organizational, Quality of Health Care trends
- Abstract
This article presents and illustrates the main features of a proposed process-oriented approach for patient information distribution in future health care information systems, by using a prototype of a process support system. The development of the prototype was based on the Visuera method, which includes five defined steps. The results indicate that a visualized prototype is a suitable tool for illustrating both the opportunities and constraints of future ideas and solutions in e-Health. The main challenges for developing and implementing a fully functional process support system concern both technical and organizational/management aspects., (© The Author(s) 2015.)
- Published
- 2016
- Full Text
- View/download PDF
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