Sharing Clinical Notes and Electronic Health Records with People Affected by Mental Health Conditions: Scoping Review (Preprint)

BACKGROUND Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. First studies conducted in general health settings show promising results of Patient-accessible EHRs (PAEHRs) which are also often referred to as “open notes”. However, studies carried out in Mental Health Care (MHC) settings highlight several challenges which require further exploration. OBJECTIVE This scoping review aimed to map the 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 carried out for six electronic databases. Studies were included focusing on digital sharing of clinical notes or EHRs with people affected by a mental health condition up to September 2021. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The Preferred Reporting Items for Systematic Reviews and Meta-analyzes extension for Scoping Reviews guided the narrative synthesis and reporting of findings. RESULTS Of the 1.032 papers screened, 29 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the US. PAEHRs were examined in outpatient (n=27) and inpatient settings (n=9), while a third of all research was conducted in Veterans Affairs Mental Health. There was no focus on specific psychiatric diagnoses among SUs. Narrative synthesis allowed to integrate findings according to the different stakeholders: (1) Service users 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 used, or the uncovering of undiscussed diagnoses. (2) For health care professionals (HCPs), concerns outweighed the benefits of sharing EHRs, including an increased clinical burden due to more documentation efforts and possible harm triggered by reading the notes. (3) Relatives gained a better understanding of their family members' mental problems and were able to better support them when having access to their EHR. (4) 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 co-produced process. Acceptance issues among HCPs align with findings from general health settings and may change over time. Notably, 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 clinical effectiveness, efficiency and implementation of this socio-technical intervention.