A Nordic Perspective on Patient Online Record Access and the European Health Data Space.

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.

Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden.

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.

Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden.

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.

Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online.

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.

Mapping Patients' Online Record Access Worldwide: Preliminary Results from an International Survey of Healthcare Experts.

While research on the effects of patient access to health records is increasing, a basic understanding of the spread of patient-accessible electronic health records worldwide is lacking. In this survey of healthcare experts with professional and personal experience from 29 countries, we explored the state of patient online record access (ORA). We asked participants whether ORA exists in their country and which information is available through it. Experts in all polled countries reported having some national access to health records, with 6 (21%) countries providing exclusively paper-based records and 23 (79%) countries having ORA. Overview of test/lab results and prescription/medication lists were the most commonly available information. Free-text clinical notes were accessible in less than half of the surveyed countries (12, 41%). We will continue to map the state of patient ORA, focusing on traditionally underrepresented countries.

Primary Healthcare Professionals' Improvement Suggestions for the Patient Accessible Health Record.

Patients' online record access is a worldwide phenomenon, where Sweden is one of the pioneers in actual countrywide implementation. Healthcare professionals (HCPs) have previously raised usability issues with e-health systems and proposed several solutions, yet no studies have explored PAEHRs from this perspective. The aim of this study was to describe primary HCPs' suggestions on how the Swedish online record could be improved. They (n=14) were asked what they would like to improve with the system to increase usability and usefulness for patients or for themselves. Suggestions covered expanding what patients could view, simplification of the service for both the patients and themselves, adding feedback functions, and limiting access to only signed records.

The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia.

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.

Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden.

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.

Experiences of a Novel Structured Foot Examination Form for Patients With Diabetes From the Perspective of Health Care Professionals: Qualitative Study.

BACKGROUND: Diabetes is a growing threat to public health, and secondary diseases like foot complications are common. Foot ulcers affect the individual's quality of life and are a great cost to society. Regular foot examinations prevent foot ulcers and are a recommended approach both in Sweden and worldwide. Despite existing guidelines, there are differences in the execution of the foot examination, which results in care inequality. A structured foot examination form based on current guidelines was developed in this study as the first step toward digitalized support in the daily routine, and was validated by diabetes health care professionals. OBJECTIVE: The study aimed to validate a structured foot examination form by assessing health care professionals' experiences of working with it "foot side" when examining patients with diabetes. METHODS: Semistructured interviews were held in a focus group and individually with 8 informants from different diabetes professions, who were interviewed regarding their experiences of working with the form in clinical practice. The users' data were analyzed inductively using qualitative content analysis. The study is part of a larger project entitled "Optimised care of persons with diabetes and foot complications," with Västra Götaland Region as the responsible health care authority, where the results will be further developed. RESULTS: Experiences of working with the form were that it simplified the foot examination by giving it an overview and a clear structure. Using the form made differences in work routines between individuals apparent. It was believed that implementing the form routinely would contribute to a more uniform execution. When patients had foot ulcers, the risk categories (established in guidelines) were perceived as contradictory. For example, there was uncertainty about the definition of chronic ulcers and callosities. The expectations were that the future digital format would simplify documentation and elucidate the foot examination, as well as contribute to the accessibility of updated and relevant data for all individuals concerned. CONCLUSIONS: The foot examination form works well as a support tool during preventive foot examination, creates a basis for decision-making, and could contribute to a uniform and safer foot examination with more care equality in agreement with current guidelines. TRIAL REGISTRATION: ClinicalTrials.gov NCT05692778; https://clinicaltrials.gov/ct2/show/NCT05692778.

Patients' Experiences of a National Patient Portal and Its Usability: Cross-Sectional Survey Study.

BACKGROUND: Patient portals not only provide patients with access to electronic health records (EHRs) and other digital health services, such as prescription renewals, but they can also improve patients' self-management, engagement with health care professionals (HCPs), and care processes. However, these benefits depend on patients' willingness to use patient portals and, ultimately, their experiences with the usefulness and ease of use of the portals. OBJECTIVE: This study aimed to investigate the perceived usability of a national patient portal and the relationship of patients' very positive and very negative experiences with perceived usability. The study was aimed to be the first step in developing an approach for benchmarking the usability of patient portals in different countries. METHODS: Data were collected through a web-based survey of the My Kanta patient portal's logged-in patient users in Finland from January 24, 2022, to February 14, 2022. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale (SUS) score. Open-ended questions asked the patients about their positive and negative experiences with the patient portal. The statistical analysis included multivariate regression, and the experience narratives were analyzed using inductive content analysis. RESULTS: Of the 1,262,708 logged-in patient users, 4719 responded to the survey, giving a response rate of 0.37%. The patient portal's usability was rated as good, with a mean SUS score of 74.3 (SD 14.0). Reporting a very positive experience with the portal was positively associated with perceived usability (ß=.51; P<.001), whereas reporting a very negative experience was negatively associated with perceived usability (ß=-1.28; P<.001). These variables explained 23% of the variation in perceived usability. The information provided and a lack of information were the most common positive and negative experiences. Furthermore, specific functionalities, such as prescription renewal and the ease of using the patient portal, were often mentioned as very positive experiences. The patients also mentioned negative emotions, such as anger and frustration, as part of their very negative experiences. CONCLUSIONS: The study offers empirical evidence about the significant role of individual experiences when patients are evaluating the usability of patient portals. The results suggest that positive and negative experiences provide relevant information that can be used for improving the patient portal's usability. Usability should be improved so that patients receive information efficiently, easily, and quickly. Respondents would also appreciate interactive features in the patient portal.

Adolescents Identifying Errors and Omissions in Their Electronic Health Records: A National Survey.

Patient accessible electronic health records (PAEHRs) have been proposed as a means to improve patient safety and documentation quality, as patients become an additional source to detect mistakes in the records. In pediatric care, healthcare professionals (HCP) have noted a benefit of parent proxy users correcting errors in their child's records. However, the potential of adolescents has so far been overlooked, despite reports of reading records to ensure accuracy. The present study examines errors and omissions identified by adolescents, and whether patients reported following up with HCPs. Survey data was collected during three weeks in January and February 2022 via the Swedish national PAEHR. Of 218 adolescent respondents, 60 reported having found an error (27.5%) and 44 (20.2%) had found missing information. Most adolescents did not take any action upon identifying an error or an omission (64.0%). Omissions were more often perceived as serious than errors. These findings call for development of policy and PAEHR design that facilitates reports of errors and omissions for adolescents, which could both improve trust and support the individual's transition into an involved and engaged adult patient.

Patients' Expectations of Evidence-Based Service at the Pharmacy Regarding Information on Self-Care of the Feet for Persons with Diabetes at Risk of Developing Foot Ulcers - A Cross-Sectional Observational Study in Sweden.

Purpose: Self-care of the feet is one of the cornerstones in the prevention of diabetic foot ulcers (DFU). Often, individuals with diabetes seek help at the pharmacy, but it is still unclear whether the service meets their expectations and needs. The aims were to explore patients' expectations of support from the pharmacy regarding self-care of their feet and explore how patients with diabetes felt that they managed the self-care of their feet. Patients and Methods: The included participants (n = 17), aged 70 ± 9 years, answered surveys regarding their expectations of support from the pharmacy related to self-care of the feet and how they felt that they managed the self-care of their feet. By using software, MyFoot Diabetes, they assessed their risk of developing DFU (ranging from 1 = no risk to 4 = DFU). In addition, a healthcare professional assessed the risk grade. Results: Sixteen patients had not received any information from the pharmacy regarding how to take care of their feet. Several suggestions for ways the pharmacy could help patients with diabetes to take care of their feet were registered. They included having the necessary skills and competence, giving advice regarding self-care, giving information regarding the products they market and have for sale and giving advice on ointments/creams. The participants gave several examples of how they self-managed their feet: by wearing shoes indoors and outdoors, wearing socks and compression stockings as often as possible, being physically active, inspecting their feet, being aware of the fact that their feet have no problems, washing, moisturising their feet, cutting their nails and finally seeking help to prevent DFU. Conclusion: The participants thought that they should receive competent information from the personnel at the pharmacy to improve the self-care of their feet, eg, being given information about which ointments/creams to use. Clinical Trial: NCT05692778.

Effects of patient accessible electronic health records on nurses' work environment: a survey study on expectations in Sweden.

OBJECTIVES: The introduction of information and communication technology influences the work environment of large groups of employees in healthcare. In Sweden, a national healthcare service providing patient accessible electronic health records (PAEHR) has been deployed, and this paper investigates nurses' expected effects of this implementation. SETTING: Nurses associated with the Swedish Association of Health Professionals working in healthcare such as primary care, hospitals and midwives in Sweden. Before a full-scale national implementation of PAEHR, a web survey study was distributed nationally. The respondents represented all 21 Swedish regions. Questions included five-point Likert scale questions and open questions. PARTICIPANTS: A survey link was distributed via email to 8460 registered nurses, midwives and union representatives in Sweden. The response rate was 35.4% (2867 respondents: registered nurses 84%; midwives 6%; chief position 5%; in projects 2% and other 3%). Three reminders were sent out, all of them increasing the response rate. A majority of the respondents were female (89.9%), 8.4% male, whereas 1.7% did not indicate their gender. 31.4% were under 40 years old, 53.8% 40-59 and 13.7% over 60. RESULTS: Data were analysed using exploratory factor analysis with principal component analysis as the extraction method. The analysis revealed three distinct factors related to nurses' expectations of PAEHR: (1) PAEHR improves the quality of care, (2) PAEHR improves the quality of the work environment and (3) risk and fears concerning patients' well-being. Some interesting results include that more experienced nurses are more favourable to PAEHR. Our analysis also shows that the view of the nurse-patient relationship is an essential underlying factor related to positive or negative expectations. CONCLUSIONS: Results show that the expectations and perceptions of PAEHR vary depending on the nurse's view of who the electronic record belongs to. Younger nurses are somewhat more negative towards PAEHR than older nurses.

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review.

BACKGROUND: Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) 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 age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders' (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. OBJECTIVE: The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders' (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. METHODS: A scoping review was conducted according to the Arksey and O'Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were 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 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. CONCLUSIONS: There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents' experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child's age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/36158.

Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study.

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.

Use of and Experiences With Online Access to Electronic Health Records for Parents, Children, and Adolescents: Protocol for a Scoping Review.

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 IDENTIFIER (IRRID): DERR1-10.2196/36158.

Minor and Parental Access to Electronic Health Records: Differences Across Four Countries.

An increasing number of countries are implementing patient access to electronic health records (EHR). However, EHR access for parents, children and adolescents presents ethical challenges of data integrity, and regulations vary across providers, regions, and countries. In the present study, we compare EHR access policy for parents, children and adolescents in four countries. Documentation from three areas: upper age limit of minors for which parents have access; age at which minors obtain access; and possibilities of access restriction and extension was collected from Sweden, Norway, Finland, and Estonia. Results showed that while all systems provided parents with automatic proxy access, age limits for its expiry differed. Furthermore, a lower minimum age than 18 for adolescent access was present in two of four countries. Differences between countries and potential implications for adolescents are discussed. We conclude that experiences of various approaches should be explored to promote the development of EHR regulations for parents, children and adolescents that increases safety, quality, and equality of care.

Patients' Access to Their Psychiatric Records - A Comparison of Four Countries.

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.

Healthcare Professionals' Experiences of the Work Environment After Patients' Access to Their Electronic Health Records - A Qualitative Study in Primary Care.

For healthcare personnel, the work environment is already challenging, and when eHealth systems are introduced they are often considered to further add to the complexity. This paper investigates the impact of patients' access to their electronic health records on healthcare professionals' work environment in a primary care setting in Sweden. A work environment theory-driven analysis, focusing on perceived demands, control and support, was conducted on 14 semi-structured interviews of different primary care professionals. The professionals expressed a slight increase in demands, loss of control and some increase and decrease of support. This study discusses insights on how patients' access to health records can have an impact on healthcare professionals' work environment.

Patients' Access to Their Psychiatric Notes: Current Policies and Practices in Sweden.

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.