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Patients’ Access to Their Psychiatric Notes: Current Policies and Practices in Sweden
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.ORCID iD: 0000-0002-1209-7714
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2021 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 18, no 17, article id 9140Article in journal (Refereed) Published
Abstract [en]

Patients’ access to electronic health records (EHRs) is debated worldwide, and access to psychiatry records is even more criticized. There is a nationwide service in Sweden which offers all citizens the opportunity to read their EHR, including clinical notes. This study aims to explore Swedish national and local policy regulations regarding patients’ access to their psychiatric notes and describe to what extent patients currently are offered access to them. The rationale behind the study is that current policies and current practices may differ between the 21 self-governing regions, although there is a national regulation. We gathered web-based information from policy documents and regulations from each region’s website. We also conducted key stakeholder interviews with respondents from the regions and cross-regional private care providers, using a qualitative approach. The results show that 17 of 21 regions share psychiatric notes with patients, where forensic psychiatric care was the most excluded psychiatric care setting. All private care providers reported that they mainly follow the regions’ guidelines. Our findings show that regional differences concerning sharing psychiatric notes persist, despite Swedish regulations and a national policy that stipulates equal care for everyone. The differences, however, appear to have decreased over time, and we report evidence that the regions are moving toward increased transparency for psychiatry patients.

Place, publisher, year, edition, pages
MDPI, 2021. Vol. 18, no 17, article id 9140
Keywords [en]
mental health, psychiatry, psychiatric record, psychiatric notes, patient accessible electronic health record, PAEHR, open notes, policies
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Medical Informatics
Identifiers
URN: urn:nbn:se:uu:diva-452386DOI: 10.3390/ijerph18179140ISI: 000694051800001PubMedID: 34501730OAI: oai:DiVA.org:uu-452386DiVA, id: diva2:1591524
Projects
NORDeHEALTH
Funder
NordForsk, 100477Available from: 2021-09-06 Created: 2021-09-06 Last updated: 2024-02-20Bibliographically approved
In thesis
1. Patients’ Access to Their Mental Health Records: Understanding Policy, Access, and Patient Experiences
Open this publication in new window or tab >>Patients’ Access to Their Mental Health Records: Understanding Policy, Access, and Patient Experiences
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

ORA is the concept of patients' access to clinical information, which has become more widespread worldwide. When patients are provided online record access (ORA) to their health records, concerns have been raised by healthcare professionals, especially when it comes to patients with mental health diagnoses. In the general population, positive aspects appear to outweigh the negative, yet limited research has so far explored the impact of ORA in mental healthcare. 

The overall aim of this thesis was to explore how patients experience ORA in mental healthcare through four studies: 1) a literature review aimed to explore the current literature on the experiences of ORA among mental healthcare patients, care partners, and healthcare professionals, 2) a document analysis combined with key stakeholder email interviews that aimed to explore to what extent ORA in mental healthcare has been implemented in Sweden including national and local policy regulations, 3) an online patient survey study aimed to understand mental healthcare patients' experiences with ORA in Sweden, Estonia, Finland, and Norway, and 4) an online patient survey study aimed to understand if and how patients with mental health conditions experiences of ORA differs from patients in other healthcare settings. 

More patients reported positive experiences with ORA in mental healthcare than negative experiences. Common benefits of ORA included, among others, a greater sense of control over their care, improved understanding of their mental health diagnosis, and better adherence to appointments. Despite patients' predominant positive experiences, only 17 out of 21 regions in Sweden offered ORA in mental healthcare in 2021. Additionally, many patients experienced errors and omissions and felt offended by the content of their health records. Mental healthcare patients experienced this at a higher rate than patients in other healthcare settings.

In conclusion, mental healthcare patients have higher rates of negative experiences of ORA compared to patients in other healthcare settings. However, patients' experiences of ORA are still predominantly positive among both patient groups. Yet, in 2021, only 17 regions offered patients ORA in mental healthcare. Denying mental healthcare patients ORA to protect them from negative experiences could instead increase stigma in this patient group.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2024. p. 65
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2018
Keywords
Mental health, Psychiatry, Online Record Access, Patient-Accessible Electronic Health Records, Open notes, Patient experiences
National Category
Other Health Sciences
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-522720 (URN)978-91-513-2040-3 (ISBN)
Public defence
2024-04-10, Sal IX, Universitetshuset, Biskopsgatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Projects
NORDeHEALTH
Available from: 2024-03-15 Created: 2024-02-20 Last updated: 2024-03-15

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Bärkås, AnnikaBlease, CharlotteCajander, ÅsaHägglund, Maria

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