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Background The electronic health record (EHR) has been fully established in all Norwegian hospitals. Patient-accessible electronic health records (PAEHRs) are available to citizens aged 16 years and older through the national health portal Helsenorge. Objective This study aimed at understanding how patients use PAEHRs. Three research questions were addressed in order to explore (1) characteristics of users, (2) patients’ use of the service, and (3) patient experience with the service. Methods We conducted an online survey of users who had accessed their EHR online at least once through the national health portal. Patients from two of the four health regions in Norway were invited to participate. Quantitative data were supplemented by qualitative information. Results A total of 1037 respondents participated in the survey, most of whom used the PAEHR regularly (305/1037, 29.4%) or when necessary (303/1037, 29.2%). Service utilization was associated with self-reported health, age, gender, education, and health care professional background. Patients found the service useful to look up health information (687/778, 88.3%), keep track of their treatment (684/778, 87.9%), prepare for a hospital appointment (498/778, 64.0%), and share documents with their general practitioner (292/778, 37.5%) or family (194/778, 24.9%). Most users found it easy to access their EHR online (965/1037, 93.1%) and did not encounter technical challenges. The vast majority of respondents (643/755, 85.2%) understood the content, despite over half of them acknowledging some difficulties with medical terms or phrases. The overall satisfaction with the service was very high (700/755, 92.7%). Clinical advantages to the patients included enhanced knowledge of their health condition (565/691, 81.8%), easier control over their health status (685/740, 92.6%), better self-care (571/653, 87.4%), greater empowerment (493/674, 73.1%), easier communication with health care providers (493/618, 79.8%), and increased security (655/730, 89.7%). Patients with complex, long-term or chronic conditions seemed to benefit the most. PAEHRs were described as useful, informative, effective, helpful, easy, practical, and safe. Conclusions PAEHRs in Norway are becoming a mature service and are perceived as useful by patients. Future studies should include experimental designs focused on specific populations or chronic conditions that are more likely to achieve clinically meaningful benefits. Continuous evaluation programs should be conducted to assess implementation and changes of wide-scale routine services over time.
Background The electronic health record (EHR) has been fully established in all Norwegian hospitals. Patient-accessible electronic health records (PAEHRs) are available to citizens aged 16 years and older through the national health portal Helsenorge. Objective This study aimed at understanding how patients use PAEHRs. Three research questions were addressed in order to explore (1) characteristics of users, (2) patients’ use of the service, and (3) patient experience with the service. Methods We conducted an online survey of users who had accessed their EHR online at least once through the national health portal. Patients from two of the four health regions in Norway were invited to participate. Quantitative data were supplemented by qualitative information. Results A total of 1037 respondents participated in the survey, most of whom used the PAEHR regularly (305/1037, 29.4%) or when necessary (303/1037, 29.2%). Service utilization was associated with self-reported health, age, gender, education, and health care professional background. Patients found the service useful to look up health information (687/778, 88.3%), keep track of their treatment (684/778, 87.9%), prepare for a hospital appointment (498/778, 64.0%), and share documents with their general practitioner (292/778, 37.5%) or family (194/778, 24.9%). Most users found it easy to access their EHR online (965/1037, 93.1%) and did not encounter technical challenges. The vast majority of respondents (643/755, 85.2%) understood the content, despite over half of them acknowledging some difficulties with medical terms or phrases. The overall satisfaction with the service was very high (700/755, 92.7%). Clinical advantages to the patients included enhanced knowledge of their health condition (565/691, 81.8%), easier control over their health status (685/740, 92.6%), better self-care (571/653, 87.4%), greater empowerment (493/674, 73.1%), easier communication with health care providers (493/618, 79.8%), and increased security (655/730, 89.7%). Patients with complex, long-term or chronic conditions seemed to benefit the most. PAEHRs were described as useful, informative, effective, helpful, easy, practical, and safe. Conclusions PAEHRs in Norway are becoming a mature service and are perceived as useful by patients. Future studies should include experimental designs focused on specific populations or chronic conditions that are more likely to achieve clinically meaningful benefits. Continuous evaluation programs should be conducted to assess implementation and changes of wide-scale routine services over time.
Background Transparency is increasingly called for in health care, especially, when it comes to patients’ access to their electronic health records. In Sweden, the e-service Journalen is a national patient accessible electronic health record (PAEHR), accessible online via the national patient portal. User characteristics and perceived benefits of using a PAEHR influence behavioral intention for use and adoption, but poor usability that increases the effort expectancy can have a negative impact. It is, therefore, of interest to explore how users of the PAEHR Journalen perceive its usability and usefulness. Objective The aim of this study was to explore how the users of the Swedish PAEHR experience the usability of the system and to identify differences in these experiences based on the level of transparency of the region. Methods A survey study was conducted to elicit opinions and experiences of patients using Journalen. The data were collected from June to October 2016. The questionnaire included questions regarding the usability of the system from the System Usability Scale (SUS). The SUS analysis was the focus of this paper. Analysis was performed on different levels: nationally looking at the whole data set and breaking it down by focusing on 2 different regions to explore differences in experienced usability based on the level of transparency. Results During the survey period, 423,141 users logged into Journalen, of which 2587 unique users completed the survey (response rate 0.61%). The total mean score for all respondents to the SUS items was 79.81 (SD 14.25), which corresponds to a system with good usability. To further explore whether the level of transparency in a region would affect the user’s experience of the usability of the system, we analyzed the 2 regions with the most respondents: Region Uppsala (the first to launch, with a high level of transparency), and Region Skåne (an early implementer, with a low level of transparency at the time of the survey). Of the participants who responded to at least 1 SUS statement, 520 stated that they had received care in Region Skåne, whereas 331 participants had received care in Region Uppsala. Uppsala’s mean SUS score was 80.71 (SD 13.41), compared with Skåne’s mean of 79.37 (SD 13.78). Conclusions The Swedish national PAEHR Journalen has a reasonably good usability (mean SUS score 79.81, SD 14.25); however, further research into more specific usability areas are needed to ensure usefulness and ease of use in the future. A somewhat higher SUS score for the region with high transparency compared with the region with low transparency could indicate a relationship between the perceived usability of a PAEHR and the level of transparency offered, but further research on the relationship between transparency and usability is required.
Background In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients. Objective The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care. Methods In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts’ written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations. Results A total of 70 of 92 (76%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes. Conclusions This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.
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