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Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review
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
General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, MA, US.ORCID iD: 0000-0002-0205-1165
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2021 (English)In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 8, no 12, article id e34170Article in journal (Refereed) Published
Abstract [en]

Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration.

Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps.

Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings.

Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members' mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes.

Conclusions: PAEHRs in MHC may strengthen user involvement, patients' autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.

Place, publisher, year, edition, pages
JMIR Publications, 2021. Vol. 8, no 12, article id e34170
Keywords [en]
electronic health records, open notes, psychiatry, mental health, user involvement, patient advocacy, patient portal
National Category
Psychiatry Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics; Psychology
Identifiers
URN: urn:nbn:se:uu:diva-462043DOI: 10.2196/34170ISI: 000739100300011PubMedID: 34904956OAI: oai:DiVA.org:uu-462043DiVA, id: diva2:1621476
Projects
NORDeHEALTHBeyond Implementation of eHealth
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-01229Available from: 2021-12-19 Created: 2021-12-19 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, CharlotteHägglund, Maria

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