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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.