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Experiences from patients in mental healthcare accessing their electronic health records: results from a cross-national survey in Estonia, Finland, Norway, and Sweden
Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway.
Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden.
Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Faculty of Health, University of Plymouth, United Kingdom.
Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Digital Psychiatry, Dept of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States.
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2024 (English)In: BMC Psychiatry, E-ISSN 1471-244X, Vol. 24, no 1, article id 481Article in journal (Refereed) Published
Abstract [en]

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. 

Place, publisher, year, edition, pages
BioMed Central (BMC), 2024. Vol. 24, no 1, article id 481
Keywords [en]
EHRs, Electronic health records, Mental healthcare, Online record access, ORA, PAEHR, Patient-accessible electronic health records, adult, article, best practice, controlled study, electronic health record, Estonia, Finland, health care personnel, human, major clinical study, major histocompatibility complex, male, medical documentation, medical information, Norway, privacy, Sweden
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Information Systems
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-24347DOI: 10.1186/s12888-024-05916-8ISI: 001261415700005PubMedID: 38956493Scopus ID: 2-s2.0-85197430005OAI: oai:DiVA.org:his-24347DiVA, id: diva2:1883614
Projects
Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH
Part of project
Beyond Implementation of eHealth, Forte, Swedish Research Council for Health, Working Life and Welfare
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare, 2020−01229Academy of Finland, 352501Academy of Finland, 352503Uppsala University
Note

CC BY 4.0 

© The Author(s) 2024

Correspondence Address: A. Bärkås; Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden; email: annika.barkas@kbh.uu.se; CODEN: BPMSC

This work was supported by NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH, (Project #100477), the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (Project #2020−01229), the Strategic Research Council at the Academy of Finland (Project #352501 and #352503), and the Norwegian Centre for E-health Research. CB was supported by a Keane Scholar Award. The study funders played no role in the study design, data interpretation, writing of the results, nor decision to submit the manuscript for publication. Open access funding provided by Uppsala University.

Available from: 2024-07-11 Created: 2024-07-11 Last updated: 2025-09-29Bibliographically approved

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Rexhepi, HanifeÅhlfeldt, Rose-Mharie

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