A Nordic Perspective on Patient Online Record Access and the European Health Data Space (Preprint)

Hägglund, Maria; Kharko, Anna; Bärkås, Annika; Blease, Charlotte; Cajander, Åsa; DesRoches, Catherine M.; Fagerlund, Asbjørn Johansen; Hagström, Josefin; Huvila, Isto; Hörhammer, Iiris; Kane, Bridget; Klein, Gunnar O.; Kristiansen, Eli; Moll, Jonas; Muli, Irene; Rexhepi, Hanife; Riggare, Sara; Ross, Peeter; Scandurra, Isabella; Simola, Saija; Soone, Hedvig; Wang, Bo; Zolbin, Maedeh Ghorbanian; Åhlfeldt, Rose‐Mharie; Kujala, Sari; Johansen, Monika Alise

doi:10.2196/preprints.49084

Cited by 3 publications

(2 citation statements)

References 45 publications

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“…To study patients' experiences of ORA, we conducted an online nationwide survey as part of NORDeHEALTH, our international research project studying the implementation of patient portals in Estonia, Finland, Norway, and Sweden [33]. The survey is known as the NORDeHEALTH 2022 Patient Survey, and its methodology is fully described elsewhere [34].…”

Section: Overviewmentioning

confidence: 99%

“…A Swedish national patient survey was conducted in 2016 to investigate patients' experiences accessing their EHR [8], however, with a limited focus on mental health. In the NORDeHEALTH research project [33], an online patient survey was performed to explore the experiences of patients' ORA [34], providing a greater opportunity to investigate the experiences of patients with MHC with accessing and reading their PAEHR. Importantly, most or all research on the interaction between the presence of mental health diagnoses and experience with PAEHR has focused on patients with specific diagnoses [15,32].…”

Section: Introductionmentioning

confidence: 99%

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

Bärkås,

Kharko,

Blease

et al. 2023

J Med Internet Res

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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.

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Section: Overviewmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Bärkås,

Kharko,

Blease

et al. 2023

J Med Internet Res

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

Bärkås¹,

Kharko²,

Blease³

et al. 2023

Preprint

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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.

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How Patients Affected by a Severe Mental Health Condition and Health Care Professionals Communicate via a Patient Portal: Qualitative Analysis of Secure Messages (Preprint)

Meier-Diedrich,

Turvey,

Wördemann

et al. 2024

Preprint

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BACKGROUND Patients’ online access to their medical records and secure messaging (SM) via patient portals are becoming increasingly prevalent on an international scale. SM offers a number of potential benefits, including enhanced health outcomes and improved patient engagement. However, it also raises concerns about effects on the therapeutic relationship and may be constrained by factors such as limited digital literacy and access to digital devices. Evidence on the use of SM in mental health is limited and results are inconclusive. OBJECTIVE The present study examines the purpose and usage patterns of the SM function in patient portals used by patients affected by a severe mental health condition and healthcare professionals (HCPs). METHODS SMs (n=310) of 38 patients and 4 HCPs from 3 psychiatric outpatient clinics in Brandenburg were analyzed using thematic analysis. RESULTS Four core functions of SM were identified: (1) reporting/feedback, (2) interpersonal, (3) intrapersonal, and (4) organizational functions. Through the reporting and feedback function, SM could convey treatment-relevant information and elicited feedback on treatment and medication. Interpersonal aspects in SM included expressions of gratitude, well wishes, and emotional support, whereas intrapersonal SM components allowed patients to reflect on their treatment and provide self-encouragement. Organizational aspects addressed scheduling, appointments, and administrative tasks. CONCLUSIONS SM in psychiatric outpatient care is multifaceted and can potentially enhance therapeutic relationships and accessibility of care, but it requires training, guidelines, and workflow adjustments. Further research is needed to address the ethical, privacy, and practical implications for effective implementation. CLINICALTRIAL The study has been registered with the German Clinical Trials Registry (No. DRKS00030188).

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A Nordic Perspective on Patient Online Record Access and the European Health Data Space (Preprint)

Cited by 3 publications

References 45 publications

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

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

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

How Patients Affected by a Severe Mental Health Condition and Health Care Professionals Communicate via a Patient Portal: Qualitative Analysis of Secure Messages (Preprint)

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