Rose-Mharie Åhlfeldt

Background: Patients’ access to their electronic health record (EHR) supports their participation and satisfaction with care. Despite the benefits, some patients have been upset after reading their EHR. Additionally, health care professionals are concerned that patients, particularly those with mental health conditions, may be offended, and they have expressed a need for further guidelines on how to write EHRs. Experiences among various patient groups are essential to support the relationship between patients and professionals. However, prior studies have often focused on single patient groups or specific clinical contexts, leaving a limited understanding of differences across multiple patient groups. Objective: This study aimed to determine whether certain patient groups are more likely to feel offended while reading their EHRs and which information is perceived as offensive and to provide a comparison across multiple patient groups using a mixed methods approach. Methods: A cross-sectional survey was conducted via the Finnish national patient portal using a web-based patient survey, adopting a mixed methods approach. The survey included multiple-choice and open-ended questions. The total sample comprised 4681 respondents. The survey respondents were placed into 4 patient groups: those who had received care for mental health, cancer, or other conditions and those who had received no care. Associations between the type of care and patients who felt offended were estimated using multivariate binary logistic regression. Inductive content analysis (n=502) was conducted to identify information perceived as offensive in the EHR. Results: The patients who had received mental health care (166/654, 25.4%) or cancer and mental health care (9/39, 23.1%) were more likely to be offended by information in their EHR compared to the other groups (cancer care: 37/375, 9.9%; other conditions care: 383/3316, 11.6%; no care: 22/206, 10.7%; other conditions care: odds ratio 0.37, 95% CI 0.29‐0.46; P <.001; model A). Additionally, female patients, those with bad or very bad health conditions, and patients with bachelor’s or master’s degrees were significantly more likely to feel offended. Errors, the health care professionals’ disrespectful language, and perceived unnecessary information were the most frequently mentioned reasons for being offended. Patients with mental health care reported more often that unnecessary information and professionals’ opinions and word choices were experienced as offensive compared to other patients. Conclusions: This study contributes new knowledge by identifying differences across multiple patient groups. Although a minority of patients felt offended by their EHR, health care professionals should consider that some patients, particularly those who have received mental health care or cancer and mental health care, may be offended by specific information or word choices in their EHRs. To address this, health care professionals should receive education on how to write their notes in a neutral tone and avoid potentially offensive topics. Improving the quality of EHRs could strengthen the relationship between patients and professionals.

Introduction: Patient-accessible electronic health records (PAEHRs) offer benefits, such as supporting self-management and care engagement. However, some patients, particularly those with mental health conditions, might experience negative emotions such as worry when reading unexpected or sensitive information in their PAEHRs. Methods: A web-based survey of 4459 respondents distributed via the Finnish national patient portal included multiple-choice and open-ended questions. Respondents consisted of two patient groups who had received care either for 1) mental health or 2) other conditions. Inductive content analysis was performed to explore the kind of information that was perceived as sensitive in the PAEHR. Associations between sociodemographic factors including the type of care and reporting health information as sensitive were calculated via the multivariable binary logistic regression analysis. Results: Mental health (61.3%), and intimate health (8.3%) were the most frequently mentioned as especially sensitive types of information among respondents, who also stressed that the sensitive nature of the health information depended on the context. Within the mental health information type, therapy or treatment was most often mentioned (3.5%) as sensitive. Respondents who had received mental health care were significantly more likely to perceive certain information as sensitive (53.2%) than other patients (28.8%; Adjusted OR=2.783, 95% CI=[2.333, 3.319], p<0.001). Conclusions: This study delves into the sensitive character of mental health information within PAEHR. The sensitivity of information also depends on the consequences for the patients when data will be used in another context. Documenting sensitive information carefully and safeguarding it is recommended to maintain trust in electronic health records and healthcare.

BACKGROUND Patient accessible electronic health records (PAEHRs) aim to enhance patient engagement by providing access to clinical information, thus strengthening patient-clinician relationships. In Sweden, implementation of a national PAEHR began in 2012, and reached nationwide scale-up in 2018, when all residents above the age of 16 were provided online record access (ORA). Adoption and use has seen a steady increase over time. OBJECTIVE This study compares data from two national patient surveys conducted in Sweden (in 2016 and 2022) regarding patients' experiences and usage of Patient-Accessible Electronic Health Records (PAEHRs). The aim is to explore and understand possible changes in patients’ reasons for, and perceived value of, use. The study also addresses the quality of communication with healthcare and information types provided. METHODS The Swedish national surveys were conducted in 2016 and 2022. They collected data on patients' experiences with PAEHRs, including demographic information, reasons for using PAEHRs, and perceived impacts on communication with healthcare providers. Statistical analyses, including Chi-square tests, were used to compare responses between the two surveys. RESULTS The 2016 survey included responses from 2,587 patients, while the 2022 survey included 13,008 respondents. Key findings indicate an increase in the positive perception of PAEHRs over the six years. In 2022, 72.3% of respondents reported that PAEHRs supported communication with healthcare professionals, compared to 60.0% in 2016 (p < .001). The primary reason for using PAEHRs shifted from general interest in 2016 to prepare for healthcare visits in 2022. There was also a notable increase in patients valuing access to their lab test results, from 95.0% in 2016 to 97.8% in 2022 (p < .001). Demographic analysis revealed that among those taking part in the survey, a higher proportion of older adults and individuals with higher education were among the respondents in the 2022 survey, however, the differences were not statistically significant. CONCLUSIONS The study demonstrates that the overall highly positive patient attitude towards and usage of PAEHRs in 2016 persisted and was strengthened in 2022. The findings point to the growing importance of PAEHRs in enhancing patient engagement and communication with healthcare providers. This research contributes valuable insights into the evolving landscape of eHealth services and their impact on patient-centered care.

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. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-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 framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development 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 of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. Results: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of 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 with patients; 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 system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the health care system context dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries. Conclusions: This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs.

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.

Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR.

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. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-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 framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development 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 of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. RESULTS In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of 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 with patients; 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 system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the health care system context dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries. CONCLUSIONS This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs.