To Örebro University

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.

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.

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.

BACKGROUND: Patients' online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users' overall experiences with national PAEHR services.

METHODS: The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users' experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data.

RESULTS: 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one in ten (10.7%) noted that unauthorised individuals had seen their health information.

CONCLUSIONS: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences.

Electronic health records (EHR) are continuously evolving to better meet user needs, but the process is complicated by healthcare professionals and patients often disagreeing on priority areas of development. While this may be due to differences between professional and personal experiences, little is known whether specialist healthcare knowledge also affects user needs when using EHRs as patients. To investigate this, we analysed the responses of patient users in Sweden from the NORDeHEALTH 2022 Patient Survey. In the survey, respondents indicated whether they had healthcare education, and rated how useful various EHR information types and functions are. Average ratings were comparable between the two user groups, but significant differences were observed for information types and functions. Those without healthcare education rated the ability to point out errors as most useful, while those with healthcare education - the ability to contribute health information. The findings suggest healthcare education can influence users' EHR preferences.

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.

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.

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.

Background: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland,Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Althoughsociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depthcross-country analysis has not been developed.

Objective: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a frameworkfor sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents thedevelopment of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use.

Methods: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series ofworkshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were representedin the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questionsrelated to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the4 participating countries, and the project participants researched various national sources to provide the relevant data for thecomparisons in the 10 sociotechnical dimensions.

Results: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from featuresand functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steeringof health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared withpatients; human-computer interface; people; workflow and communication; the health care organization's internal policies,procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care systemcontext. The dimensions added during the study mostly concerned background information needed for cross-country comparisonsin particular. Several similarities were identified among the compared countries, especially regarding hardware and softwarecomputing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHRautomatically. Most of the differences could be identified in the health care system contextdimension. One important differenceconcerned the governing of information and communications technology development, where different levels (state, region, andmunicipality) were responsible in different countries.

Conclusions: This is the first large-scale international sociotechnical analysis of services for patients to access their electronichealth records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis wasdeveloped and is presented to enable comparison studies in other national contexts to enable future implementations and evaluationsof PAEHRs.

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.