Search

UNSTRUCTURED 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.

BACKGROUND Patient-accessible electronic health records (PAEHR) hold promises in empowering patients, but their impact may vary between mental healthcare and somatic care. Medical professionals and ethicists have expressed concerns about the potential challenges of PAEHR on patients, especially those receiving mental healthcare. OBJECTIVE This study aimed to investigate the experiences and perceptions of online access to electronic health records (EHR) among mental health and somatic patients, as well as to understand how these experiences and perceptions vary among patients receiving mental healthcare in different care locations. METHODS Using the Norwegian data from the NORDeHEALTH 2022 Patient Survey, we conducted a cross-sectional descriptive analysis of service use and perceptions of perceived mistakes, omissions, and offenses by mental health and somatic patients. Content analysis was used to analyze free-text responses to understand how patients experience the most serious mistakes in their EHR. RESULTS Among 9505 survey participants, we identified 2008 mental health patients (MHP) and 7086 somatic patients (SP). A higher proportion of MHP (69%) reported using PAEHR increased their trust in their healthcare providers, compared to SP (60%). However, a significantly higher percentage of MHP (48.6%) than SP (26.7%) reported perceiving mistakes in PAEHR, especially related to their diagnoses (20.8% MHP vs 15.2% SP). MHP also reported significantly higher odds of detecting omissions (37.7%) and being offended by what they read (36.3%) in their EHR compared to SP (26.3% and 11.7%, respectively). Both MHP and SP frequently perceived body weight and substance use descriptions as mistakes. Furthermore, patients receiving hospital inpatient care were more likely to detect mistakes (67.7%) and omissions (42.7%). In comparison, patients in outpatient and primary care detected mistakes (50.4% and 32%, respectively), omissions (40.1% and 29%, respectively) less frequently. Hospital inpatients also reported feeling more offended (58.5%) by what they read in their EHR, compared to patients in primary (21%) and outpatient care (34.3%). CONCLUSIONS Most MHP and SP respondents showed a positive attitude toward online access to EHR. However, MHPs, especially those receiving hospital inpatient care, were more critical towards their EHR compared to SP. While online access to EHR can provide patients with valuable information and support trust, it is important to consider the choice of clinical terminology and accurate, non-judgmental documentation, particularly for patients belonging to healthcare groups with unique sensitivities. CLINICALTRIAL Not applicable

BACKGROUND Previous research report that patients with mental health conditions report benefits, e.g. increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). Still, in mental healthcare, PAEHRs remain controversial as healthcare professionals are concerned that patients feel worried or offended by the content of the notes. However, research on the prevalence of negative experiences with PAEHRs among mental healthcare patients and how that compares to other patients is lacking. OBJECTIVE To establish if and how experiences of patients with and without mental healthcare differ in using their PAEHRs, by 1) comparing patient characteristics and differences in using the national patient portal between the two groups; and by 2) establishing group differences in the prevalence of negative experiences e.g., rates of errors, omissions, and offence between the two groups. METHODS The analysis was performed on data from an online patient survey distributed in the Swedish national patient portal, as part of NORDeHEALTH’s international research project. The respondents were patient users of the patient portal, at least 15 years old, and categorised either as those with mental healthcare experience (mental healthcare, MH) or with any other healthcare experience (non-mental healthcare, non-MH). Patient characteristics included gender, age, education, employment, health status. Portal use characteristics included frequency of access, encouragement to read the record, instances of positive and negative experiences. Negative experiences were explored through rates of error, omission, and offence. Data were summarised through descriptive statistics. Group differences were analysed through Pearson’s chi-square. RESULTS Of the total sample (N=12,334), MH respondents (n=3131) experienced errors (50.65%; non-MH 35.98%), omissions (34.78%; non-MH 26.37%) and offences (37.78%; non-MH 17.56%) in the electronic health record at a higher rate compared with non-MH respondents (n=9203). Respondents reported that the worst identified error (MH 50.13%; non-MH 41.26%) and omission (MH 57.12%; non-MH 51.76%) were ‘very important,’ but most did nothing to correct them (MH 41.29%; non-MH 42.17%). Most of the respondents identified as women in both groups. CONCLUSIONS About 1 in 2 mental healthcare 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-MH group. MH patients also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). At a glance, these findings validate some of healthcare professionals’ worries about providing MH patients with PAEHR. Notably, it is not clear why MH patients had different experiences and how it impacted them. Further research is necessary to investigate the implications. CLINICALTRIAL Not applicable.

BACKGROUND If, how, and when to provide adolescents with access to their electronic health records (EHRs) online is a debated question. However, few studies have investigated adolescents’ experiences of using patient portals, and the lack of guidance has led to vast variety in approaches adopted by EHR vendors and healthcare providers worldwide. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. OBJECTIVE The aim of the study is to explore the experiences and opinions of adolescents’ patient portal users. Specifically, to investigate use frequency, encouragement to read, reasons for reading health records online, perceived effect on trust and communication with healthcare professionals (HCPs) with respect to online record access (ORA), and perceived usefulness of information and functions in a patient portal. METHODS Using a convenience survey available through the Swedish online health portal, data were collected during three weeks in January and February 2022. The survey was designed to explore patients’ experiences using the national patient portal and included 83 items. This study focused on a subset of close-ended and free-text questions related to the aforementioned topics, and included only respondents aged 15-19. Demographic factors and frequencies on Likert style questions were reported with descriptive statistics, while Kruskal-Wallis Tests were used for group comparisons. RESULTS Of 13 008 users who completed the survey, 218 (1.68%) 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 only those encouraged by doctors reported significantly higher use frequency (P=.003). All types of information were rated high on usefulness, while some functions were rated low, such as being able to block specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity, and most felt that reading their notes improved their trust for their HCP (143/218, 65.6%), and that it supported better communication with HCPs (145/218, 66.5%). Almost no gender differences were identified. CONCLUSIONS Adolescents who read their records online perceive it to be useful and that it improves their trust in and communication with their HCPs. Encouragement by HCPs can lead to increased use of patient portals among adolescents, and particularly doctors’ and nurses’ encouragement need further investigation. Findings should be considered in the future design of patient portals for adolescents. CLINICALTRIAL Approval from the Ethical Review Authority in Sweden (#2021-05229).

BACKGROUND While a large number of surveys have been conducted on patients accessing their own health records in recent years, there is a limited number 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 To investigate the socio-demographic characteristics and experiences of patients who access their electronic health records (EHRs) through the national patient portals in Norway, Sweden, Finland, and Estonia. METHODS A cross-sectional web-based survey via national online health portals. Target participants were patients that accessed the national patient portals at the start of 2022, and were aged 15 years and above. The survey included a mixture of close-ended and free-text questions about participant socio-demographics, usability, experiences with healthcare and the EHR, reasons for reading health records online, experience with errors, omissions and offence, opinions about security and privacy, as well as the usefulness of portal functions. Here, we summarised data on participant demographics, past experience with healthcare and the patient portal through descriptive statistics. RESULTS 29,334 users completed the survey, of which 9,503 (32.40%) portal users were from Norway, 13,008 (44.35%) from Sweden, 4,713 (16.07%) from Finland and 2,104 (7.17%) from Estonia. National samples were comparable according to reported gender, with two-thirds identifying as women. Age distributions were similar across the countries, but Finland had more older users while Estonia had more younger. The highest attained education and presence of healthcare education varied between the national samples. In all four countries, patients most commonly rated their health as ‘fair’ (38.48%). In Estonia, participants were more often inclined to rate their health positively, while Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, the majority of patients received some care in the last two years (86.55%). Mental healthcare was more common (21.24%) than oncological (12.52%). Overall, the majority of patients had accessed their health record ‘2 to 9 times’ (39.40%), with the most frequent users residing in Sweden, where one-third of patients accessed it ‘more than 20 times’ (35.14%). CONCLUSIONS This is the first large-scale international survey to compare patient users’ socio-demographics and experiences with accessing their EHRs. While 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 investigating patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined datasets from the NORDeHEALTH 2022 Patient Survey. CLINICALTRIAL Not applicable.

BACKGROUND Internationally, patient-accessible electronic health records (PAEHRs) are increasingly being implemented. Beyond reported benefits to patients, the innovation has prompted concerns among health care professionals (HCPs), including the possibility that access incurs a ‘dumbing down’ of clinical records. Currently no review has investigated empirical evidence of whether and how documentation changes after introducing PAEHRs. OBJECTIVE This paper presents the protocol for a scoping review examining potential subjective and objective changes in HCPs documentation after using PAEHRs. METHODS This scoping review will be carried out based on the framework of Arksey and O’Malley. Several databases will be used to conduct a literature search (APA PsycInfo, CINAHL, PubMed, Web of Science Core Collection). Authors will participate in screening identified papers, to explore the research questions: How do PAEHRs affect HCPs documentation practices? What subjective and objective changes to the clinical notes arise after patient access? Only studies that relate to actual usage experiences, and not merely prior expectations about PAEHRs, will be selected in the review. Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The Mixed Methods Appraisal Tool will be used to assess the quality of the studies included. RESULTS The results from this scoping review will be presented as a narrative synthesis structured along the key themes of the corpus of evidence. Additional data will be prepared in charts or tabular format. This scoping review protocol was first initiated by Uppsala University in collaboration with Brandenburg Medical School in January 2023. The results are expected to be presented in a scoping review in July 2023. They will be disseminated at scientific conferences and through publication in a peer-reviewed journal. CONCLUSIONS To our knowledge, this is the first scoping review that will address potential change in documentation after implementation of PAEHRs. The results can potentially help affirm or refute prior opinions and expectations among various stakeholders about the use of PAEHRs and thereby help to address uncertainties. They may help to provide guidance to clinicians in writing notes and thus have immediate practical relevance to care. In addition, the review will help to identify any substantive research gaps in this field of research. In the longer term, our findings may contribute to the development of shared documentation guidelines, which in turn are central to improving patient communication and safety.

UNSTRUCTURED This is test MS 7 FEB 2023

BACKGROUND In 2022, NHS England announced plans to ensure that all adult primary care patients in England would have full online access to new data added to their general practitioner (GP) record. However, this plan has not yet been fully implemented. Since April 2020, the GP contract in England has already committed to offering patients full online record access on a prospective basis and on request. However, there has been limited research into UK GPs’ experiences and opinions about this practice innovation. OBJECTIVE This study aimed to explore the experiences and opinions of GPs in England about patients’ access to their full web-based health record, including clinicians’ free-text summaries of the consultation (so-called “open notes”). METHODS In March 2022, using a convenience sample, we administered a web-based mixed methods survey of 400 GPs in the United Kingdom to explore their experiences and opinions about the impact on patients and GPs’ practices to offer patients full online access to their health records. Participants were recruited using the clinician marketing service Doctors.net.uk from registered GPs currently working in England. We conducted a qualitative descriptive analysis of written responses (“comments”) to 4 open-ended questions embedded in a web-based questionnaire. RESULTS Of 400 GPs, 224 (56%) left comments that were classified into 4 major themes: increased strain on GP practices, the potential to harm patients, changes to documentation, and legal concerns. GPs believed that patient access would lead to extra work for them, reduced efficiency, and increased burnout. The participants also believed that access would increase patient anxiety and incur risks to patient safety. Experienced and perceived documentation changes included reduced candor and changes to record functionality. Anticipated legal concerns encompassed fears about increased litigation risks and lack of legal guidance to GPs about how to manage documentation that would be read by patients and potential third parties. CONCLUSIONS This study provides timely information on the views of GPs in England regarding patient access to their web-based health records. Overwhelmingly, GPs were skeptical about the benefits of access both for patients and to their practices. These views are similar to those expressed by clinicians in other countries, including Nordic countries and the United States before patient access. The survey was limited by the convenience sample, and it is not possible to infer that our sample was representative of the opinions of GPs in England. More extensive, qualitative research is required to understand the perspectives of patients in England after experiencing access to their web-based records. Finally, further research is needed to explore objective measures of the impact of patient access to their records on health outcomes, clinician workload, and changes to documentation.

Background Patients with chronic illnesses with physical and cognitive disabilities, particularly stroke survivors with aphasia, are often not involved in design and evaluation processes. As a consequence, existing eHealth services often do not meet the needs of this group of patients, which has resulted in a digital divide. Objective The aim of this study was to examine the effectiveness and user satisfaction of an electronic care and rehabilitation planning tool from the perspective of stroke survivors with aphasia. This would help us gain knowledge on how such a tool would need to be adapted for these patients for further development. Methods Usability tests were conducted with 9 postdischarge stroke survivors with aphasia. Effectiveness was measured using task-based tests, and user satisfaction was studied through qualitative interviews at the end of each test. All tests were audio recorded, and each test lasted approximately 1 hour. The data were analyzed using qualitative content analysis. As the tool can be used by stroke survivors either independently or with some support from their next of kin or care professionals, the research group decided to divide the participants into 2 groups. Group 1 did not receive any support during the tests, and group 2 received some minor support from the moderator. Results The results showed that the care and rehabilitation planning tool was not effective for stroke survivors with aphasia, as many participants in group 1 did not accomplish the tasks successfully. Despite several usability problems and challenges in using the tool because of patients’ disabilities, the participants were positive toward using the tool and found it useful for their care and rehabilitation journey. Conclusions There is a need to involve patients with chronic illnesses more in the design and evaluation processes of health information systems and eHealth services. eHealth services and health information systems designed for this group of patients should be more adaptable and flexible to provide them with appropriate functionalities and features, meet their needs, and be useful and easy to use. In addition, the design and evaluation processes should be adapted, considering the challenges of this patient group.

BACKGROUND Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHR) have led to variability in adolescent and parental access across providers, regions and countries. There is no compilation of evidence to guide policy decisions in matters such as access ages and extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end-users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents. OBJECTIVE To identify, categorize and summarize knowledge about different stakeholders (e.g. children/adolescents, parents, healthcare professionals (HCPs), policy makers, and designers of patient portals or PAEHRs) use and experiences of EHR access for children, parents and adolescents.x METHODS A scoping review was conducted according to the Arksey and O’Malley 1 framework. A literature search identified eligible papers that focused on electronic health record access for children, adolescents, and parents, published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycInfo). RESULTS The approach resulted in 4817 identified articles and 74 included articles. The papers were predominantly viewpoints based in the US, and the number of studies of parents was larger than that of adolescents and HCPs combined. Both adolescents and parents with and without access were examined, where adolescents and parents without access anticipated low literacy and confidentiality issues, however did not report such concerns after being given access. On the other hand, adolescent confidentiality remained an issue for HCPs after experiencing PAEHRs, and most viewpoint papers provided recommendations on implementation in regards to this. CONCLUSIONS There is limited research on pediatric PAEHRs, particularly regarding adolescents’ experiences with online access to their records. Findings could inform the design and implementation of future regulations around access to patient-accessible electronic health records. Further examination is warranted on experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current abritrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure portals are equipped to safely and appropriately manage a wide variety of patient circumstances. INTERNATIONAL REGISTERED REPORT RR2-10.2196/36158

BACKGROUND Patient portals that provide access to electronic health records offer a means for patients to better understand and self-manage their health. Yet, patient access to electronic health records raises many concerns among physicians, and little is known about the use practices and experiences of patients who access their electronic health records via a mature patient portal that has been available for citizens for over five years. OBJECTIVE We aimed to identify patients’ experiences using a national patient portal to access their electronic health records. In particular, we focused on understanding usability-related perceptions and the benefits and challenges of reading clinical notes written by health care professionals. METHODS Data were collected from 3135 patient users of the Finnish My Kanta patient portal through a web-based survey in June 2021 (response rate: 0.7%). Patients received an invitation to complete the questionnaire when they logged out of the patient portal. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale score. Patients were also asked about the usefulness of features, and whether they had discussed the notes with health professionals. Open-ended questions were used to ask patients about their experiences of the benefits and challenges related to reading health professionals’ notes. RESULTS Overall, patient evaluations of My Kanta were positive, and its usability was rated as good (System Usability Scale score approximation: mean 72.7, SD 15.9). Patients found the portal to be the most useful for managing prescriptions and viewing the results of examinations and medical notes. Viewing notes was the most frequent reason (978/3135, 31.2%) for visiting the portal. Benefits of reading the notes mentioned by patients included remembering and understanding what was said by health professionals and the instructions given during an appointment, the convenience of receiving information about health and care, the capability to check the accuracy of notes, and using the information to support self-management. However, there were challenges related to difficulty in understanding medical terminology, incorrect or inadequate notes, missing notes, and usability. CONCLUSIONS Patients actively used medical notes to receive information to follow professionals' instructions to take care of their health, and patient access to electronic health records can support self-management. However, for the benefits to be realized, improvements in the quality and availability of medical professionals’ notes are necessary. Providing a standard information structure could help patients find the information they need. Furthermore, linking notes to vocabularies and other information sources could also improve the understandability of medical terminology; patient agency could be supported by allowing them to add comments to their notes, and patient trust of the system could be improved by allowing them to control the visibility of the professionals’ notes.

BACKGROUND Patient portals are increasingly being implemented worldwide to ensure that patients have timely access to their health data, including patients’ access to their electronic health records. In Sweden, the e-service Journalen is a national patient-accessible electronic health record (PAEHR), accessible on the web through the national patient portal. User characteristics and perceived benefits of using a PAEHR will influence behavioral intentions to use and adoption; however, poor usability, which increases effort expectancy, may have a negative impact. Therefore, it is of interest to further explore how users of the PAEHR Journalen perceive its usability and usefulness. OBJECTIVE On the basis of the analysis of the survey respondents’ experiences of the usability of the Swedish PAEHR, this study aimed to identify specific usability problems that may need to be addressed in the future. METHODS A survey study was conducted to elicit opinions and experiences of patients using Journalen. Data were collected from June to October 2016. The questionnaire included a free-text question regarding the usability of the system, and the responses were analyzed using content analysis with a sociotechnical framework as guidance when grouping identified usability issues. RESULTS During the survey period, 423,141 users logged into Journalen, of whom 2587 (0.61%) completed the survey (unique users who logged in; response rate 0.61%). Of the 2587 respondents, 186 (7.19%) provided free-text comments on the usability questions. The analysis resulted in 19 categories, which could be grouped under 7 of the 8 dimensions in the sociotechnical framework of Sittig and Singh. The most frequently mentioned problems were related to regional access limitations, structure and navigation of the patient portal, and language and understanding. CONCLUSIONS Although the survey respondents, who were also end users of the PAEHR Journalen, were overall satisfied with its usability, they also experienced important challenges when accessing their records. For all patients to be able to reap the benefits of record access, it is essential to understand both the usability challenges they encounter and, more broadly, how policies, regulations, and technical implementation decisions affect the usefulness of record access. The results presented here are specific to the Swedish PAEHR Journalen but also provide important insights into how design and implementation of record access can be improved in any context.

BACKGROUND As patient online access to electronic health records becomes the standard, implementation of access for adolescents and parents varies across providers, regions, and countries. There is currently no international compilation of evidence to guide policy decisions in matters such as age limit for access and the extent of parent proxy access. OBJECTIVE This paper presents the protocol for a scoping review of different stakeholders’ (including but not limited to end users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents. METHODS This scoping review will be conducted according to the Arksey and O’Malley framework. Several databases will be used to conduct a literature search (PubMed, CINAHL, and PsycInfo), in addition to literature found outside of these databases. All authors will participate in screening identified papers, following the research question: How do different stakeholders experience parents’, children’s, and adolescents’ online access to the electronic health records of children and adolescents? Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The data to be analyzed are from publicly available secondary sources, so this study does not require an ethics review. RESULTS The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. This scoping review protocol was first initiated by Uppsala University in June 2021 as part of the NordForsk-funded research project NORDeHEALTH. The results are expected to be presented in a scoping review in June 2022. The results will be disseminated through stakeholder meetings, scientific conference presentations, oral presentations to the public, and publication in a peer-reviewed journal. CONCLUSIONS This is, to our knowledge, the first study to map the literature on the use and experiences of parents’ and adolescents’ online access to the electronic health records of children and adolescents. The findings will describe what benefits and risks have been experienced by different stakeholders so far in different countries. A mapping of studies could inform the design and implementation of future regulations around access to patient-accessible electronic health records. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/36158

BACKGROUND Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)—often referred to as open notes—have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. OBJECTIVE This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders’ perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. METHODS A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. RESULTS Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members’ mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes. CONCLUSIONS PAEHRs in MHC may strengthen user involvement, patients’ autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.

UNSTRUCTURED From April 5, 2021, as part of the 21st Century Cures Act, all providers in the United States must offer patients access to the medical information housed in their electronic records. Via secure health portals, patients can log in to access lab and test results, lists of prescribed medications, referral appointments, and the narrative reports written by clinicians (so-called open notes). As US providers implement this practice innovation, we describe six promising ways in which patients' access to their notes might help address problems that either emerged with or were exacerbated by the COVID-19 pandemic.

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.

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 Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. OBJECTIVE The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. METHODS Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory—autonomy, relatedness, and competence—at the outset. RESULTS Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. CONCLUSIONS Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.

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.

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. DOME