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.

Zusammenfassung Ziel Untersucht werden die Bedingungen und Hürden der Einführung von Stationsäquivalenter Behandlung nach § 115d SGB V (StäB). Methode Qualitative Analyse von Interviews und Fokusgruppen mit Mitarbeitenden (n = 43) an 11 psychiatrischen Kliniken in Berlin/Brandenburg. Ergebnisse Auf Systemebene wird die Implementierung u. a. durch eine inadäquate Leistungsdefinition, fehlende Vorgaben auf Landesebene, Personalmangel und MDK-Prüfungen erschwert. Dies führt bei Kliniken zu zurückhaltender Umsetzung mit teilweise unzureichender personeller Ausstattung der StäB-Teams. Weitere Barrieren betreffen das Fehlen mobiler Lösungen zur Dokumentation und Teamkommunikation. Auf Ebene der Mitarbeitenden wirken sich ein Mangel an Information und Kooperation sowie unklare Aufgaben und Rollen hinderlich aus. Schlussfolgerungen Für eine bedürfnisorientierte, flexible und flächendeckende Einführung von StäB sind Nachbesserungen an den Rahmenbedingungen sowie weitere Forschung zur Wirksamkeit und Implementierung notwendig.

Patient accessible Electronic Health Records (PAEHRs) are increasingly implemented internationally. However, studies carried out in the mental health care setting report several practical and ethical challenges when introducing PAEHRs. In this paper we aim to explore the requirements of a PAEHR system in mental health. As part of a participatory design process, we collected qualitative data from service users and staff in a rural mental health day clinic setting, which can be summarized in the following themes: I) Function and way of the documentation; II) Impact on Treatment; III) Concerns about PAEHRs; IV) time of access to PAEHRs; V) Different views on what to share; VI) Access, Data Privacy and Special Features. Our study uncovered the complexity and special requirements and barriers to the design of PAEHR in mental health. While we are in an early stage of our study, we will continue this iterative process and adapt the PAEHR system to the specific needs of the users and domains.

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